There are always eyebrow-raising things people say to those with cancer and/or their families. Maybe not everyone would find each of the comments listed below to be offensive but they’ve been submitted by readers as ones they wish they hadn’t heard. I like to revisit this topic every so often to allow people to post comments and add to the list. Some of these come from the comments the last time I discussed this topic (here).

At the bottom you will find a link to the post I did on suggestions about what TO say and how to help a friend with cancer or other illness.

I’m not going to respond to each of the statements below. I’m just going to list them for your consideration. Some are just strange. Some miss the mark. Some are downright rude.

They weren’t all said to me, but they were said. Gee, that almost makes me want to have an award for the most offensive one listed below…

**please make sure to see the link in red at the bottom of the page for a post of things that are recommendations of what to say

……………………………………………………………

“It will all be okay, I just know it.”

“Someday you will put this all behind you” (to a stage IV patient)

“Don’t worry, things will get better.” (to a stage IV patient)

“So when will you be all better?” (to a stage IV patient)

“When will your cancer be gone?” (to a stage IV)

“But you don’t look sick.”

“Lance Armstrong cured his stage IV cancer. You can too.”

“But I thought you had chemo and surgery last time. How could it be back? This is why people shouldn’t do chemo.”

“Is it terminal?”
“What’s your prognosis?”
“It could be worse, you know.”
“Everything happens for a reason.”
“It’s all part of a larger plan.”

“You’re only given what you can handle.”

“All you need to do is think positive.”

“Half the battle is the mindset. Be determined to beat cancer and you will.”
“Now that you’ve been through this you’re due for some good things to happen.”
“I’m sure it’s fine/I’m sure it’s nothing.”

“Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?”

“Well, do they think [the chemo] is going to do any good?”

“At least it’s not on your face where everyone could see the scars, besides you don’t really need your breasts anyway.”

“A new-agey friend asked me if I had been really angry about anything 7 years before my diagnosis that I had repressed. (What had I done to cause my DCIS?)”

“I was advised to write a letter to my husband detailing how much I loved him so he could have something when I died. [My husband] was standing next to me as I was being given this little chestnut.”

“One said to me the day after my malignant melanoma diagnosis: ‘Maybe this will help you evaluate all the things you need to change in your life.’ ”

“Last year I had part of my cervix removed surgically for PRE-cancerous cell growth. I was at home recovering from surgery and still had days to await the results of whether or not I had clear margins, etc. Those days that drag on and you just wonder and hope. My mother in law came over with dinner (nice) and then proceeded to stand there and tell me about every person she knew with cancer, how they died, and how their families went on.”

“When my mother was diagnosed with breast cancer, I was a wreck. My (now ex) husband got tired of it really fast and made a rule to confine my sadness to one day per week: “you are only allowed to cry about this on Fridays.” If I felt like I absolutely had to cry Sat-Thur, I had to do it in private.”

“The worst thing said to me was right before I was to have a new lump checked out. I was a 7 yr breast cancer survivor at the time, with 3 children ranging from 14-8 yrs old. When I told a pastor’s wife I was worried about the lump, but was most worried about my children if I got bad news, she responded, ‘Oh, they will get over it. You’d be surprised how quickly. I know I got over my dad dying in a year, and I was about their age.’ ”

“Gosh, I thought chemo was supposed to make you lose weight”

“Nearly every person I told about my mother’s death felt the need to tell me about some relative of theirs that had passed away and how awful their death was.”

“The very stupidest thing was said to me recently, a few months after treatment ended for a recurrrence. I was out to eat with my youngest son, now 16, and ran into an acquaintance. She said she’d given it a lot of thought, and wanted me to know that there were “perks” to dying at early age, in case I did. I’m 47. (and feeling fine by the way, and had just told her so.) But she proceeded to tell me 3 of “the perks” if I were to die early. One “perk” was that I wouldn’t be the grieving spouse, another was that I had already parented “through the fun years” and wouldn’t have to see my kids make bad life choices, and the other one….oh, I wouldn’t have the aches n pains that came with old age like she was experiencing. She was “sincere” and had “thought about it,” and is a nurse!! Just blew my mind.”

1. Random stranger on the street: Do you have cancer? Me: Yes. RS: How long do you have? Me: –
2. On telling peripheral people (e.g. hairdresser, or friend of a friend) of my diagnosis, they proceed to tell you that their uncle/cousin/friend’s mother had cancer and then that they died. I guess they are trying to make a connection and it’s the first thing that pops into their head, but I really did not want to hear about death at that time.
3. An email from a friend of a friend (a homeopath) telling me that breast cancer is caused my a negative relationship with your own mother. This is definitely not the case!
4. People asking me if I knew how I got my cancer (and then offering me something to read about some “natural” therapy they have heard about or are selling).
5. I fully got sick of hearing the words “positive” and “strong”; so much so that I banned my family and friends from saying them.

“People choose their sicknesses. He chose to have cancer by not managing his negative energy and he chose to die by not fighting.”

“Someone I know has pancreatic cancer. She didn’t suffer too many adverse effects throughout chemo which was fortunate for her. Her daughter, who knows I went through chemo all a year earlier, made a comment that her mother must have a particularly strong constitution because she didn’t have trouble with side effects. Ya, unlike like the rest of us weak wussies who who were knocked out by chemo! I knew that she was grasping at any tiny sign that her mom might experience a full recovery so I kept my mouth shut.”

My brother’s wife was diagnosed with ovarian cancer, stage III last year. It was a bad time for the whole family – we are a family of 10 siblings and we are pretty close. A lot of people made pretty insensitive comments not knowing what to say to a cancer patient. While she was going through cancer therapy, i only spoke to my brother, for fear i might say the wrong thing to my sister-in-law. When i did eventually pick up courage to speak to her, she said she only wanted prayers, being a devout Catholic – and i am a closet agnostic, the only one in the family!. I went along with the lie and said i was praying intensely for her..As of now she has recovered – i don’t know whether her cancer is in remission or she is cancer free. The PET scan too did not show any metastases. She has been spending a lot of time in church and attributes her cure to God’s intervention. We are so thrilled for her…

“I’ll pray for you,” is one of those phrases which will be very appreciated by some folks, and a big turn-off to others. How a lot of these comments will be taken has a lot to do with who hears them; it’s hard to find universal agreement on what sounds appropriate versus what sounds stupid. Of course, some words will turn off a majority of people, and some will be acceptable to a majority. You think you lied when you told her that you were praying for her, but maybe in some sense you were actually praying for her in your own secular way. I mean as long as you were genuinely concerned, who’s to say you were lying. Do you know what I mean?

I had APL when I was 20 and I cant tell you how many time I heard “Ill pray for you” It was nice the first few times but then it becomes the last thing you want to hear. I know it comes from the heart and a lot of people just don’t know what to say. I had a lot of crazy comments. My favorite comment in particular was” I knew a boy who had the same cancer you have but he died. I’m sure you will pull through though. I’ll be sure to pray for you.” He was a youth pastor. Just what I wanted to hear. Thankfully my mom found this wonderful circle map and it helped tremendously. I try to share it with as many people as possible. It helps with any kind of illness or tragedy. http://www.thesilverpen.com/breast-cancer-information-facts/how-to-help-someone-who-has-cancer/the-ring-theory-how-not-to-say-the-wrong-thing/

I was diagnosed with triple negative invasive ductal carcinoma. According to my doctor it was a breast cancer that was rare in a Caucasian woman my age and hence of great concern. They offered me the usual recommended treatment – surgery, chemo and possible radiation.
My experience about “stupid things people say to those with cancer” was in regard to the fact that I decided against the modern standard treatment. I didn’t make that decision lightly. I went to school, so to speak. The last time I researched and studied this hard was during finals during my college years. I decided to treat my cancer the holistic way with the help of an awesome herbalist ( R.N.D., M.H., C.R.) and I am happy to say that I am in remission!
During this time, when I told people about my cancer they would look at me and say: “But you don’t look sick!?” and quite often did I feel that they therefore, didn’t give the same seriousness and respect to my battle with cancer that they would have given to somebody who was loosing weight, loosing her hair, and other physical signs of those choosing chemo.
I would therefore like to mention that it often isn’t the cancer that makes the illness visible to others, but rather the treatment. You are poisoning your body and of course that shows. Natural treatments do not have that ugly side effect but just because somebody has chosen to go that ‘different’ route doesn’t mean they are not battling a terrible decease and that it isn’t incredibly hard and often painful, emotionally and physically.
I learned to take the “but you don’t look sick” comments with a grain of salt, but in all honestly, it really belittles the seriousness of it all. Thank you.

Wow, that’s the first time I ever had anyone with feelings so close to mine on this. I wish I could talk to you. I declined chemo too. As I struggle to change my lifestyle and is natural methods to fight any remaining cancer cells, I feel alone in this. Sometimes I feel like the fight doesn’t count unless you’re bald and pitiful looking. I do take tamoxifen, and that gives me a little confidence cents under percent of my sales or ER positive. But, since two nodes were positive and my KI67 score was through the roof, I was slated for the big guns. I just couldn’t go through with it. Now I feel like I’m fighting cancer alone.

H. Lewis, I’m so sorry you feel alone. I felt very alone too. I found a lot of BC and TNBC blogs and online groups. They’ve been wonderful, especially the TN groups. I don’t know of anyone who’s not done ANY standard treatment and only alternative, but most if not all who do standard treatment also do some degree of alternative too — from a little to a lot.

I was also diagnosed with TNBC – IDC, Stage 2b, grade 3. Had standard treatment, so I was bald. Also, in my ‘before chemo orientation’ I was told the chemo (AC&T) often causes gain weight. I was surprised. I thought all chemo made people lose weight. Once I began chemo, I quickly gained about 10 pounds, but I wasn’t eating much and what I did eat was healthy.

I worked from home during treatment, due to weak immune system, but came in to the office every now and then. I was often told by co-workers “WOW, you look GREAT!” or “You look AMAZING!!” I was always thrown by those comments. I wondered “do I really look good?” I didn’t think so. I was bald and bloated with a pasty complexion. I wondered if they were saying I looked good, because they expected me to look worse or maybe they were trying to make me feel better? Or, maybe the complements were passive/aggressive, implying that I looked so good that I shouldn’t need to be working from home. …Whatever the reason, it made me feel uncomfortable. I also heard “wow, I thought you’d be really skinny?!” I’d say “Yeah, me too! Thanks for noticing!”

I’m nearly 3 years since diagnosis. The comments made me crazy for so long. It doesn’t bother me as much these days, probably since I’m not in active treatment. But, when I do hear a stupid, rude, awkward or ignorant comment (I’ve had so many of those listed on this blog), I have a strong, quick response.

J. Williams, I’m so sorry you feel alone. I felt very alone too. I found a lot of BC blogs and online groups. They’ve been wonderful, especially the TN groups. I don’t know of anyone who’s not done ANY standard treatment and only alternative, but most if not all who do standard treatment also do some degree of alternative too — from a little to a lot.

I was also diagnosed with TNBC – IDC, Stage 2b, grade 3. Had standard treatment, so I was bald. Also, in my ‘before chemo orientation’ I was told the chemo (AC&T) often causes gain weight. I was surprised. I thought all chemo made people lose weight. Once I began chemo, I quickly gained about 10 pounds, but I wasn’t eating much and what I did eat was healthy.

I worked from home during treatment, due to weak immune system, but came in to the office every now and then. I was often told by co-workers “WOW, you look GREAT!” or “You look AMAZING!!” I was always thrown by those comments. I wondered “do I really look good?” I didn’t think so. I was bald and bloated with a pasty complexion. I wondered if they were saying I looked good, because they expected me to look worse or maybe they were trying to make me feel better? Or, maybe the complements were passive/aggressive, implying that I looked so good that I shouldn’t need to be working from home. …Whatever the reason, it made me feel uncomfortable. I also heard “wow, I thought you’d be really skinny?!” I’d say “Yeah, me too! Thanks for noticing!”

I’m nearly 3 years since diagnosis. The comments made me crazy for so long. It doesn’t bother me as much these days, probably since I’m not in active treatment. But, when I do hear a stupid, rude, awkward or ignorant comment (I’ve had so many of those listed on this blog), I have a strong, quick response.

Just stumbled onto this website. I am an ovarian cancer stage 1A survivor. I am nearly 3 years out, but still can’t seem to get past it all. It’s like I am “stuck” and the nightmarish time I went through with chemo and depression. I take pills for anxiety and sleep but the depression is still there. I think the worst is that I feel “shunned” by my children…like somehow I was responsible for making them worry. They don’t want much to do with me anymore even though I think I’ve made a terrific “comeback”…it is so awful to be disliked by your children when I have done everything I knew how to stay as “normal” as possible throughout a life-alterning event. As for stupidest comments: “you will always have this hanging over your head” was one of my favorites. So is referring to cancer as a ‘”journey”….really?? A journey?? Someone asked me the other week “when was the last time you were checked” OMG. I hope life will be normal again one day…thanks for letting me vent

Perhaps it was a compliment; the reason you don’t look sick is most likely attributed of you choosing the holistic route. But that does not by default mean that those comments discredit the seriousness of your illness. None of us are exempt from death.

You are an example for all those persons who look for altenative treatments against cancer. You are an hero and deserve together with you doctor to be honored and idolatrized for your really human power resisting the psichologic presure to give yourself up to the medical industrial sloughter.
My sister was systematically murdered by ”conventional oncologists”. She surrended their brainwash.

If you are willing and able, I am desperate for someone with whom to chat. I too have triple negative aggressive — haven’t heard the ductal part — breast cancer. Being strong for everyone is taking a toll.
Thank you.

Realized that I somehow goofed — I am a totally dummy on computers. My message was for H. Lewis, June 15, 2016. Specifically. On the other hand, if someone else can relate or help, I welcome you. Thanks

I’m over 3 years out from TNBC. There are wonderful TNBC groups on Facebook. I have one favorite that I could connect you with. Lots of info. Great resources! Wish I could email you privately, because there are so many trolls and scammers who visit this page.

The TNBC groups on FB are closed groups, so any lurking trolls and scammers, please leave us alone — we screen heavily and block those who are just there to sell their wares!

To Christine who commented March 6. I am a high IQ person who is also weirdly and completely not tech savvy. Any clues how I find the closed groups on FB. I’ll try to find you and hope that the trolls have some common decency. Yeah, I know — I’m sure they do. What a world we live in that these sociopaths prey on the terribly sick and dying. But that’s another soapbox. Thanks, Christine. May we meet again.

Oh. My. God. I had so many unfeeling comments that were said to me, too. Some were so bad they were laughable. Some were so bad they were hurtful. Some were so bad they left me speechless. Here’s a sampling that most of us probably heard in some form or another:

*At least you got the good cancer (big smile)
*I would just tell my doctor to “cut ’em off” and be done with it (big smile)
*Well now you get to get a great pair, right? (big smile)
*I love your new boobs (big smile)
*You’re so lucky that you don’t have to wear a bra (big smile)
*I know exactly how you feel. (big smile)
*Cancer is a gift (I’m not kidding)

And my personal favorite was from a casual friend who had been diagnosed with breast cancer a year before me. She had a very different experience though – no surgery as the needle biopsy removed the pre-cancerous cells and she had radiation. She told me that she couldn’t stand to see all the ugly, bald women in the waiting room for radiation and so asked to be switched to a standing late afternoon time slot. This is when I was one of those ugly, bald women (well, I wore a cute wig!) sick as a dog from dense dose chemotherapy, 54 weeks of Herceptin, 5 weeks of radiation, and continued Zometa infusions. Needless to say, we aren’t really buddies any longer!

I…am…nearly speechless after reading your post, especially regarding the cruelty of the person who “couldn’t stand to see all the ugly, bald women in the waiting room” I am praying for her as I write this. And for you beautiful and brave Carrie! That person never was your friend.

I had to tell a friend she could NOT borrow one of my wigs for Halloween…lol – ugh. This was awkward. She calls two times a day to see how I’m feeling. I know she loves me, and is a true friend, but this is a little much. I’m at the beginning of two years of this.

When people don’t realise that there are Cancer cells all over the body and that surgery only takes the Tumor out, hate people who say they know how we feel, even other Cancer patients with the same Cancer don’t say that

The ugly, bald women?? OMG what a bitch! I’m not sure how I would reply to something like that. I’m just so stunned someone actually said that to you! Glad you got rid of that negative force in your life.
Hope you are doing well 🙂

I have been trying to find some help in responding to people who have – actually quite passionately- stated that my cancer is due to my own creation/anger/bad karma from a previous life….
Yes, believe there is a mind/body connection and yes, emotions can affect one’s health BUT it is the “blanket” attitude without overall insight and considerations that some people are “sharing” with me, that I have a problem with. I feel like saying, “Seriously, are you kidding me? I wanted to manifest this cancer in my life”?
Any tips/hints?

I deal with this on a daily basis as my mother is into spiritual newageism… all I can say is that I smile and nod as they are so stuck in they beliefs there is no point counter-arguing. Save your strength, go get a pedicure and rant to your best girlfriend about it.
-Ellie pregnant with lymphoma

It’s that blame-the-victim stuff I can’t stand. I’m trying not to be too judgmental because I have said many, many dumb things on-and-off throughout my life. There was an example in the article about someone saying, “You chose your cancer.” I’d like to ask such a person, “Did you chose to be as much of an idiot as you are?”

Thank you I needed this.. My husband who, believe it or not, was the greatest man I’ve ever known before now, blames me for our financial problems (that are primarily due to offshore layoffs and my bout with sepsis ) .. He’s acting as if I deliberately went out and got cancer! Trust me.. This is not by choice!!!

Bottling up negative emotions is more likely to increase stress within the body. It is VERY healthy for someone going through something so difficult to express how they’re feeling. Talking candidly can reduce stress and promote well-being – so vital when enduring treatment.

I am a breast cancer ALUMNI – not just a survivor! It’s been 14 years. My solution to people’s well meaning but misguided comments… I didn’t talk
about it to anyone! Simple. Just the necessary family members, my daughter
and Mother- otherwise… no one.

A choice you are of course free to choose but those of us who thought we were “alumni” and then found out we later had incurable cancer can’t choose to just hide what we have. Similarly I never felt hiding it from my children or asking them to keep a secret was right (or possible). So it’s nice that you had options and could have (what you believe) was a limited time dealing with it, but that just isn’t realistic for many people.

Dani,
That is what i chose to do is well. I have a large family so i told the ones closest to me and only a few friends and because of that i have had many say that so and so said that you didnt really have cancer that you just wanted attention. My only response was well i guess if i just wanted the attention dont you think i would have told you or posted it online. I didnt want the pity or the attention it was easier for me this way because then i would have to get up and do things i dont know it worked for me.

Hi, I sorta wish I had done the same as you and not tell too many people and yet at the same time I feel the prayers helped me immensely. It’s after the fact, the looks, the stares, and people questioning why you don’t want to talk about cancer. Anyway, more than anything I want to ask how did you keep yourself positive all these years. Obviously it worked! Did you make any dietary changes, etc…. if you don’t mind sharing. I found myself inspired by your post! Thanks and have a blessed night!

Couldn’t agree more. If they don’t know, then you don’t have the comments. It is hard sometimes to cope, but don’t need advice from people who don’t have a clue to know what it feels like to have cancer. This is my second time having cancer and chose not tell this time. I feel what they don’t know can’t hurt me. Most people don’t want to talk to you about it anyway. It makes them uneasy. I feel better this time around acting like nothing is wrong with me. Don’t have to answer any questions that make me feel like bad. I feel like I am in control of my life. It is my business and don’t want to be talked about. This way I am treated normally.

My 22 year old daughter has high risk, late responding pediatric ALL leukemia. After 20 months of chemo she relapsed, and we are now awaiting a bone marrow transplant to save her life. She has spent many, many months in the hospital. I lost my job, and we barely scrape together the money we need to cover our COBRA payments to keep her insured. It is a huge task that her step-father, sister, and I are doing on our own (but the care falls mostly on me). The most difficult thing I hear from people is how they would help out, but they are too busy. The other thing I hear is that the hospital which is an hour away is too inconvenient to drive to, and if I could figure out how she could be treated closer it would work better (even though this is the only hospital in our area that treats her type of cancer). Her boyfriend and his mother can’t be relied on, and her bio dad doesn’t show up at all. I want to say I’m spending every day keeping her alive so what could you possibly be doing this is more important, and if your child were sick and/or dying, I would go to the end of the earth to help you.

Hi Peggy Sue,
I am so sorry to hear of your hardship, and that the people meant to be supporting you are too selfish to really care. It is so easy to find excuses , some people are just shallow and self absorbed. Nothing in this world is more important than a life. You are obviously a wonderful ,and strong mum and my thoughts and prayers are with you and your daughter.
Linda

My daughter just turned 26 yrs old two weeks ago. A week before her birthday we found out she had breast cancer, which has spread to her lymph nodes. Stage 3a invasive duct cancer. My friend Missy asked for prayers on her Prayer Warrior facebook page. Some lady replied that her 23 year old daughter just died from breast cancer last year and if you want, you can request me as a friend. I do not want. I’m not ready to hear that yet. The past month has been so stressful. My daughter didn’t have insurance. The women’s clinic knew about the lumps in her breast and under her arm in June- but since she was uninsured and under 40 they did nothing to help her. I understand your strugger with the insurance. My daughter could not qualify for our state medi-cal program because she was over 21 and not pregnant. She is also diabetic, so although she had a full time job, she could not afford high risk health care insurance. I’ve been dealing with governmental agencies since her diagnosis, trying to get her an emergency medical card. If we apply for SSI, she can get one- but it takes 3-5 months for approval. We don’t have that kind of time. She needs treatment now. Today I think I made progress. Anyway, I know I’m rambling. I’m still struggling on how to deal with all of this. Your child being diagnosed is a parent’s worst nightmare.

I am so sorry to hear about the troubles that you have been having with your daughter. Do you live near a hospital with cancer services? If so, they should have a social worker or breast nurse navigator to help you with getting insurance. Some have a special hospital only coverage which can start quickly in order to help you get the care that she needs. I work in a large cancer center, and we get people in quickly to see the breast surgeon and begin treatment. If you don’t live near one, it may be helpful to find the closest NCI cancer designated hospital and get a treatment plan there and maybe do chemo/rad closer to where you live. Hopefully this helps!

I’m sure breast cancer sucks for any woman and her family, especially if the woman is at the “not yet pre – menopausal – pre – menopausal stage.” Maybe they should have more things for YOUNGER WOMEN (from about 20 – something to about 40 – something ) since we CAN and DO get BREAST CANCER. We also unfortunately could become victims of our own denial in terms of misleading ourselves into thinking we had some sort of BENIGN CYST.

I was diagnosed with a malignant brain tumor at the age of 7. As I was entering high school I needed a very aggressive 88 week course of pretty toxic chemotherapy. However, it did not make my hair fall out. A few days after the treatments, I was able to go out around the neighborhood and see my friends. To most of them, I appeared completely fine and many people judged me as well as my mother. I was called “Baby” and ”Faker” among other things. I was accused of pretending to be sick to get out of doing school work. It made a horrible experience 10X worse. People can be incredibly stupid when it come to this. Don’t judge others

I would like to thank Lisa for sharing this, “The stupid things people say to people with cancer & their families”. My dad was diagnosed with bladder cancer in the beginning of June this year. The Chemotherapy treatments alone are extremely hard on him to say the least. I have been researching topics such as what you wrote and yours is the best by far. You are very direct and clear which i appreciate very much. This experience has been extremely difficult for my family especially and most importantly my dad. He went to pay his rent for this month and the manager asked about the PIC line port in his arm, after he explained what it was and why he has it she replied, “How long do you have?” She wasn’t thinking about what she was saying or how it would effect my dad. I felt that was pretty inappropriate of her to say. It was then that I started researching about what is appropriate/considerate vs. what is inappropriate/inconsiderate to say to a cancer patients. In fact my dad found your site and showed it to me. I plan to share this site with family members and friends with the intention that they take caution and consideration to there words and actions. I feel that it is better to seek to understand rather than to be understood. I feel that my dad should be accepted for who he is and for where he is with what he is going through. I think that some people take the life they have for granted and don’t take others’ feelings, or situations into consideration prior to speaking there opinion. Again, I can’t thank you enough for what you wrote. My dad as well as myself have found it very useful. I hope that it opens many minds to consider what people are going through.

I quite agree with your comment Jody there is no end to some people’s ignorance Circumspection is not a by-word with some people. My husband has been told he has prostate cancer the treatment is going well towards the end of it now. Mostly the comments have been very positive and of a caring nature from people. On person when told by my husband about his illness as he hadn’t been to his sports club for ages and asked where he had been said oh will you have to have all your private parts removed. My husband answered no i won’t that is very radical surgery and i think that is only if the cancer is that bad. He then went on to say that prostate cancer is caused by to much drinking of alcohol my husband replied i don’t drink at all. By this time he was getting rather annoyed and walked away.

As someone who’s had breast cancer, I’ve heard some of these responses. But the really insensitive ones – it’s hard to imagine that people really utter these things! It’s almost comical if it weren’t so painful to the hearer. Of course each of us has our own pet peeves. What might be painful to one person may not be so to another. And so much depends on your relationship to the person!

People can be so insensitive. I have to think that half the time it’s because they just don’t know what to say. (the other half, they’re just stupid). When my sister died at 22, a doctor friend said to me (this was a real physician…a breast cancer surgeon, mind you): “At least she didn’t have a husband or kids left behind.” (clarification: she didn’t die of cancer.)
However, my mom died a few years ago of lymphoma. Even though I was on the receiving end of condolences, I still wonder what really is the best or most helpful thing to say to someone. There are so many ways to be insensitive and they’re listed above. What types of comments are most helpful/supportive/sensitive?

I have learned to say: “I have no idea what it feels like to go through what you are dealing with… if you need me for errands, emotional support, a hug, please call. (Be sure to state what you CAN do!) Maybe this will help.

This is where expert patients can be a real help – sharing posts like this, and talking about how to talk to cancer patients. People want to be helpful – usually – but they don’t know how, and then random weirdness comes out of their minds and mouths. A lot of it is driven by fear and sub-conscious schadenfreude, too. The “wow, thank gawd it’s not ME” effect. I’ll spray this across my social sphere!

My husband is battling melanoma which has spread from a “mole” which was removed, to lymph node removal (17 of them-only 1 showed cancer) He is scared, as am I, but he’s also angry and I’m in the line of fire. I can now say, from personal experience, that you’ll never know how helpless and alone you can feel till something like this enters your life. It’s one of those things that words cannot offer comfort for. It sucks and just to have someone to talk frankly about your feelings and such to is a blessing. I could use a friend right now..I live in the Netherlands…the rest of my family is in California. I’m trying like the dickens to be strong and I’m thankful for sites like this with folks in the same boat as me to relate to. Good luck and best wishes to all

Hi Linda. I’ve just read your post and hope that you have found an understanding ear. My first husband died from renal cell cancer in 2001. To the day (no minute) he died I was in complete denial. I did not properly explore my feelings and fears with anyone – least of all him. I am wracked with guilt. My best friend’s husband has now been diagnosed with metastatic lung cancer and I want to support her and her husband. So I’ve been looking on Lisa’s site for help. I’m happy to be here for you too – if you need me.

Linda, I am sorry that you and your husband are dealing with this terrible disease, Melanoma. I can’t tell you how many times I heard the dreaded statement “at least it’s only skin cancer”. Those of us in the trenches know better. May I suggest that you look into the MPIP forum at melanoma.org. Melanoma.org and Melanoma International Foundation are the only reliable melanoma sites on the web. The patient/caregivers forum is full of people who are both knowledgable and caring and more than willing to listen to and share with others. Please feel free to contact me if you need to cummunicate with someone who understands your feelings. I wish you well.

It wasn’t till after having peri-cardiac surgery and being told to see a breast surgeon immediately, when I returned home, that I was able to talk to relatves who were going through breast surgery themselves. I can relate to your feelings, and unfortunately, it seems like the victim has to reach out to others first and express their needs, because
people are afraid of saying the wrong things, or you may only get “I’m Sorry” which is a very easy response. People from my church, brought meals to my husband and I while recuperating, maybe because I had done this too while other’s were sick.

Thank you. It’s been nearly 18 years since our family dealt with this and it hit home like it was yesterday. I still have different “outtakes” of things people said randomly pop into my head at times. My personal “favorite” was the friend that called and yelled at my mother about the way she learned of the news of my mother’s diagnosis. She, too, was a nurse.

Someone did that to my mother too–she wasn’t a nurse, but one of my mother’s “best” friends (and someone I could never stand). My mom hadn’t even told me or my sisters yet, she certainly wasn’t telling anyone else before us!

The worst (for me) was having to hear about so-and-so who had such-and-such cancer and, oh yeah, they died. Also, can I just say how absolutely useless “I’m praying for you.” is as a comfort/condolence.

That is so true! I just lost my mother to metastic brain melanoma and if I hear “well she is in a better place” one more time, I may go postal. I have now taken to saying, “Well compared to lying in a hospital bed, too weak to lift herself, doped up on dexamethasone for the swelling and edema, haldol for anxiety and narcotic for pain, yes I suppose she is in a better place. But compared to living as she was before all this, no she is not.”

No it NEVER helps when they tell you “He’s in a better place”. My first husband died of squamous cell carcinoma aka esophageal cancer on December 27th, 2000. I also HATED for them to tell you they “know how you feel” when they have never had a spouse die of cancer. Used to make me so mad. I am aware that nobody seems to know what to say in a time like that but MAN ! Don’t tell me you know how it feels when you have NO CLUE WHATSOEVER. Obviously I am STILL mad about it and it’s been 13 & 1/2 yrs. !! 😉

Thanks for sharing this list Lisa. Worst that has happened to me is someone put their fingers under the front of my cover to pull it off exclaiming “Are you bald under there”. You can imagine my response…

Yes, thank you for listing these. Hopefully it will help! If would be helpful if people could just listen or not make a comment about our health at all. Stay neutral people! Sometimes we don’t even want the so called kind comments. Just talk about the weather or the kids soccer game or something funny that happened to you. Think normal and neutral. We don’t need you to relate or lift us up. We’re fine thank you! And if we’re not, please trust that we can seek help. Take a few deep breaths and stay calm.

Telling me to be happy and positive, when that is me anyhow, is no help either..

.Prayers?…Prayers, make Them feel better, I can pray for myself, when I need to, God needs it from me, not second-hand from some-one who doesn’t really know my story….
It’s all about being self responsible, which is what Jesus was hoping for, I reckon..

“Come and see me, and we will work on, why you got the lump,”…something you would imagine God might say, but no, a mortal said that to me.

Free natural therapy help, no thanks, I have been doing natural therapy stuff since I was 17 You could know that about me already…

…I don’t need dvd’s called ‘The Cure,’ either, thanks…and, waiting to pounce on me,because of a belief that all cancers are the same and terminal and chemo is BAD!!!….don’t need that either

….And the bloods nurse, whose technique was so bad , I nearly passed out, told me that she knew another patient, who also didn’t drink alcohol, (????) well,anyway, he got cancer, and guess what?…He died!!!…needless to say, I don’t have bloods taken from HER anymore…

this feels so great to blah this out, thank-you, so much…
Also, while I’m here, I’m not seeing people, because I have been having crook,I am a single Mum,who is busy, doing chemo, not because I have been ‘avoiding,’ you….but, as long as I get remarks about YOU feeling put out by not seeing me, I will NOT make the effort to see you in future on those rare days I feel well….thanks…thanks…that felt, Fan-bloody-tastic!!!!!

Wow so nice to finally share these feelings and know that I am not alone. I think the one that bothers me the most is “BE STRONG”. I mean really? I wish people would have told me that it was natural to be scared and angry. thanks for sharing..I couldn’t said better myself.

Wow.. I read this today and laugh out loud .. I can read it tomorrow and cry. It is so incredibly uncomfortable discussing and/or sharing ourselves with others sometimes. I often say that I don’t want my incurable diagnosis to define me, but in reality when isn’t this on our minds .. either consciously or subconsciously.
I hold my husband longer & hug my children tighter!
Peace be within us all!

I was shaking with anger when I read the exchange yesterday and like Jody I, too, marveled at how calm you remained while responding. You were firm yet respectful. I wish I had your willpower and grace.

Just a couple of weeks after W. was diagnosed with Crohn’s disease at age 7 – and I was still reeling from his hospitalization and diagnosis (and all it portended for his future health and quality of life) – I found myself at a holiday gathering where a relative came up to me, grabbed me tight, and started whispering in my ear that God “gave” W. Crohn’s disease “to make him stronger” and that God will provide for him, blah, blah, blah…. I started to have a panic attack as she kept rambling on with other similar crazy statements all the while with her arms around in a vise grip. I couldn’t breathe. I finally broke free thanks to my mother noticing what was happening and intervening. I sobbed the whole drive home.

To this day I’m shocked that she and others like her would think that Crohn’s – or any other disease – is something God doles out to “teach a lesson”, to “school us”. I do have a belief in God but I sure don’t believe God pulls crap on us like that.

Not long after that awful moment, as word got out about W.’s diagnosis, another relative sent us some religious based diet book for me to use to “help” W. It might as well have been called “God’s Diet For Parents”. The implicit message was if I were a better mom, a more “faithful” mom, and if I followed what God intended my child to eat he a) might never have gotten sick and b) perhaps I could magically heal my son by “following” his ways. Good. Grief. That book quickly found its way into the circular file.

I wish people would think before they speak and not make such assumptions especially when talking with people who are grappling with grave illnesses. Some of the examples you share of what people have said to others just floor me. I am grateful to you for creating a platform where people can hopefully learn through your and others’ experiences how to be more thoughtful and appropriate when speaking to others about such personal and painful issues.

I’m new following your blog. When I had an uncle diagnosed with stage IV pancreatic cancer, I stayed away, too afraid that I would say something ridiculous. Do you have a post on the best things TO say, or how to act so that you don’t offend? I know that i would trip over my own insecurity and fear around the whole thing. Thanks.

In 2005 my Identical twin sister Jude was dying from Glioblastoma Multiforme stage 4.. No one could tell us apart. We were absolutely identical.

She was in her hospice bed when I went to her work for a tribute to her life. It was a beautiful celebration that was being recorded for her. She was too ill to make it so she sent me in her place.

I walked into the door and the first person that I saw said to me..
” OMG Jude you look beautiful.. We all thought you were on your death bed! ”

You can imagine my reaction, but when I informed her that I was her twin sister she wanted to faint on the spot. I felt like I had to because I didn’t want her to further embarrass herself when she talked to others about her/me.

I laugh now because of the absurdity of the situation. Jude and I worked 5 hrs. away from each other. These poor people had never met me before. It must have been so surreal for them to see me looking quite healthy walking among them.

My mom was diagnosed with breast cancer a year and a half ago. I remember her asking exasperatedly, “why am I not allowed to be ANGRY??” after one of those “positive attitude” conversations. I think on the one hand, the “chin up, you can beat it, attitude is everything” happy warrior script is so pervasive that people invoke it without thinking. But I also think that a lot of people get uncomfortable when you can’t or won’t put on a happy face for everyone. Demanding cheerfulness is their way of neutralizing all the unpleasant details of cancer.

The worst thing anyone said to me: my mom and I were talking to a family friend, and the topic of hair loss came up. The friend pointed at my long hair, and asked if I was going to cut it off and have it made into a wig for my mom to wear.

Thank you EJ! I know this is well over a year and a half later but my mother was just diagnosed with breast cancer (we’re still waiting for tests and surgery to provide the stage) and the constant “she’ll be fine” and “stay positive” are really annoying and frustrating seeing as we’ve only known for one week. I will be positive and I will be strong for my mom but at the moment I feel devastated she has to experience this, especially when she already fought and beat melanoma.

Honestly hearing about the people others knew who fought it and whether they beat it or not is kind of annoying (even though I know they don’t know what to say and want to connect and help) but one of the worst things I’ve had is “At least it’s one with high survival rates”. Yup that will make watching her be cut apart, sick from chemo and thrown off from hormone therapy SO much easier to handle.

What you need are what Mad Magazine used to call “Snappy Answers To Stupid Questions”:

1. “What kind of cancer do you have?” “The highly contagious kind. Don’t breathe in.”
2. “Are you in great pain?” “Only while talking to you.”
3. “Did God give you this disease?” “No, I got it from Lance Armstrong.”
4. “Was Chemo difficult for you?” “Not other than the nausea and vomiting.”
5. “Why haven’t you lost weight?” “I’ve got ‘chocolate-coated’ cancer.”
6. “I had a relative who died from cancer.” “Lucky guy — I’m stuck talking to you.”

Remember — you can get away with being cranky — you’re on drugs, and you’re sick!

7. It could be worse – Yes I could have been married to you.
8. We all die eventually – I will let you go first 🙂
9. Cancer is a gift – How would you like your’s wrapped?
10. Atleast you have time to get your stuff in order( You could have been in an accident) – Yes, I am planning my afterlife wardrobe OR Yes, I am busy planning an afterlife party – would love to have you attend!

And I agree with Dick – blame it on the drugs and your anger which caused you to have cancer in the first place!! Dick I hope you are okay with me taking the liberty of adding to your list. It was just too tempting.

Unbelievable.. some comments I can understand, others I cannot even begin to understand. I am so glad that you talk about this Lisa, it really helps educate people of being more conscious of the words they utter in an awkward moment.

Absolutely love Dick and Arpita’s hilarious responses, priceless !
There is no end to the insensitive comments made by family and ‘friends’ and yes, somehow they try to console themselves that you brought this sickening disease upon yourself….wtf !! I was diagnosed with stage 1 uterine cancer this time last year, underwent a radical hysterectomy and was told by the gyn oncologist that ‘they got it all’ only to find out over 3 months ago that I had metastatic stage 3 breast cancer. Surgery, and now going through the ‘standard’ protocol of chemo, radiotherapy & hormonal therapy. Some of the most annoying things are often said by family members like my 84 year old father whom I looked after for 3 months early this year due to bowel cancer. Each time I see him he will harp on about the fact that he had the enormous tumor removed but didn’t have to undergo chemo. Does he somehow think he’s going to get an award for being a ‘superhero’ no…..the only reason he didn’t have to undergo treatment is because the oncologist advised it would be too risky to have chemo at his age. Needless to say that I now don’t bother to answer the phone if he calls if I don’t feel like hearing the same crap over and over again. I now give myself permission to call the shots, not everyone else. I do believe it’s important to turn the tables and focus on giving yourself quality time and nurturing to muster all the strength you can to get through the treatment sessions. I don’t receive any emotional support from my husband and have resigned myself to the fact that I am going to have to build on my own inner strength to get through the next 8 months and hopefully come out the other side with some of my well-being and sanity in tact.
Hugs and best wishes to all x

Dick, these made my day. There’s nothing funny about these illnesses, but maybe that’s why people need some of this comic relief. Watch out though; isn’t that another new-agey thing some folks will tell the sick? You know, “Just laugh, and your disease will go away.” People are always looking for simple, magic bullet solutions to extremely complex problems.

How about in the case of breast cancer – “No, I got it from BILL CLINTON’S MOM????????????????????????” or if someone said how their pet had to be PD or PTS due to cancer, you could think “lucky animal for they must have had a “jerk – ass” for an owner.”

I have a few friends battling cancer in different stages. Your post made me think a lot. Honestly, it is hard to find what to say, so I normally just say I am so sorry. I am so sorry they are going through what they are going through.

but even that seems pointless and empty.

thank you once more for bringing to light difficult subjects. I admire you more than I could express.

Unbelievable!! So sorry you have to hear that kind of stuff. People are nuts.

I don’t have cancer myself, but as the mother of a child with cancer (leukemia), there are a couple of things that raise my hackles:

1. “Be strong” or “Stay strong.” As if I’m not? As if telling me that is going to help me stay that way?

2. Telling me about alternative therapies they’ve read / heard about. Usually they aren’t relevant at ALL to leukemia, particularly pediatric leukemia. Moreover, it feels like they’re implying that somehow we’re doing wrong by our child to treat her the western medicine way — chemo, etc. You know, the way that has a SCIENTIFICALLY PROVEN 90% chance of keeping my child alive.

I would love to have tips on what a good thing is to say. I know I am guilty of saying some of this comments. On Dec. 23, 2012 my mother passed away and 6 weeks later Feb. 4, 2013, my oldest brother passed away, I hate to go anywhere because people ask how I am doing or they are sorry for my loss. I now know how stupid some of these comments sound because I am sure I did the same before loosing my loved ones. HELP!!!

I’m breaking the rules and asking a question, so please feel free to ignore it if it isn’t what you want to deal with. I have been disabled by multiple chronic illnesses and for 18 years and have gotten a lot of the same obnoxious comments about positiveness, attitude, have you tried…, blah blah blah more times than I can count.

However, before I started reading your blog I didn’t know what a stage IV dx meant. Most of my experience with cancer is canine lymphoma, which is staged I-V, and stages III and IV are actually more treatable than I and II. (I know that’s odd, but there it is.) And stage V is not necessarily terminal. Anyway, two years ago if someone had told me they had stage IV breast cancer, I wouldn’t know what that meant. (Till I googled it; but not everyone has easy access to the internet, like I do.)

A lot of the questions and comments you listed seem to be people trying to understand or being uninformed. I get why they are upsetting, unwelcome, often insensitive, etc. I’m just trying to think what WOULD someone who has just been dx stage IV want to hear, since questions about terminaliness (word??) and about recovery are both so unwelcome. For someone I didn’t know intimately, I think I’d probably try to go with something open-ended like, “Wow, how are you feeling about that?” Or, “I’m so sorry, what can I do to be supportive?” But if it was someone I was close to, I would want to know, what does this mean?!

How would you (or others with cancer who want to answer) feel about someone saying, “I’m sorry. I don’t know what stage IV means. Are you willing to explain what this means for you”?

I don’t mind at all, and I have been meaning to write a post about this (you can probably understand my topics to write about exceed the time I have to write). I will be addressing the question “What does stage 4 breast cancer mean?” as soon as I can. I did talk about it in my case on the blog back in October when I was diagnosed. In many cases someone might not know the answer to the questions about treatment right away. With breast cancer it often takes weeks to find out exactly what stage it is and what subtype (hormone receptor status, HER2 status, etc…. these are subtypes which have implications for what treatments will be most effective and what your prognosis is, etc.).

However, I do want to give you an answer to your question at the end. I would love it (and if anyone disagrees, please chime in from the metastatic community) if someone actually asked that. It’s honest, it’s asking for information, it’s considerate. And, it shows an understanding that each cancer– and even within the same type of cancer– can have different treatments and outcomes. Stage 4 does not mean the same thing in testicular cancer as it does in breast cancer.

I think that people often feel they need to say something. If you ask those questions you are turning it back to the person with cancer to do the talking, which may be what you want! I mean, I know there’s an awkwardness there when you aren’t sure what to say.

It also allows the person to say, “You know, I don’t really feel like going into detail about that right now, can we talk about it another time?” in which case you have still expressed interest and willingness to learn. Those are always good things. There will be more in my next post about suggestions, but this falls into line with tips to use it as an opportunity to learn. Maybe people don’t like to explain things the way I do, or talk about it. But if they are telling you their stage 4 diagnosis and you ask, I think that’s just fine. Phrasing it as “are you willing” allows them to bow out gracefully. I bet they’d like that you were honest about not knowing much about it and wanting to learn. I’ll be incorporating this into my next post, thanks for asking a great question!

My two favorites come from the same person…my sister. First, right before my double mastectomy surgery she told me that her husband said, “Can you get a “two for one” so you can get new boobs along with your sister.” I guess it was supposed to be funny? Than about 4 years after I was cancer free she was talking about a friend who passed away with children and how difficult it was to see the children at the funeral. She proceeded to tell me that if I were to die she would not be able to comfort my children because of how difficult it would be for her. When you have friends like that who needs enemies???

It’s amazing and sad that after all your efforts to encourage thoughtfulness in non-patient friends and acquaintances, you are still dodging sucker punches. As a cancer patient myself, I’ve had my jaw drop a good number of times from the words out of people’s mouths. Most of the time, I can tell they are just stymied; they want to be supportive, but what they actually say comes out abrasive or insensitive. Those incidents, while memorable, are relatively easy to overlook.

However, when someone implies or says outright that my cancer is due to a poor choice I made in diet, or lifestyle, or a punishment for not maintaining an acceptable level of church attendance, it becomes very difficult to maintain my composure. Situations like those just show me how disconnected we really are from each other, that empathy seems to be a rarely used and undervalued gift. How can we love one another if we have trouble just being kind?

Thanks, LIsa, for continuing these posts. As incredible as some of the things that have been said to you are, perhaps it will shed a little light for others. At the very least, I hope it will encourage people to pause a bit to think before delivering something callous or hurtful. That, in itself, would be good.

Thankfully, as many lapses in consideration as I’ve witnessed, the goodness and compassion of family, friends and even some total strangers have certainly been blessings that helped sustain me. Cancer sure does give one plenty of anecdotes!

So many clueless people, so little time … This topic never gets old, Lisa. That said, I do think there are some who genuinely are at a loss as to what to say, but by no means is that an excuse. I’d add to this list, people who expect the person with cancer to be comforting THEM or who put the burden on the patient to “smile and think positively” … because we all KNOW that is the cure to all! Gah!

The two that stood out in my BC experience were these gems:

(1) “Well, at least you got the ‘good’ kind of cancer” <– excuse me, it's CANCER. There is no 'good' kind. And tell me … what part of your body would you give up involuntarily?

(2) "Well, at least you'll have fabulous new boobs. I'm jealous …" <– watch my bag while I go stick my head in the oven … seriously?! A bilateral mastectomy is the furthest thing from a 'boob job' … how are YOUR nipples feeling lately, moron?

So many others to share, but I'll save them for the next installment. ; ) If there were a Nobel prize for educating patients, you'd be a lock, Lisa! xx

I spend a lot of time comforting people who are “uncomfortable” and “don’t know what to say”. My husband died from Pancreatic cancer about a year ago. He lived one year after diagnosis. I lived in sheer panic for that year. I can barely describe how my life is now. It’s like every waking moment I just stepped off the carnival ride and my senses are spinning and confused. When people say to me that they are sorry they can’t help me, or that they don’t know what to do, or that they can’t imagine what I am going through or the many other ways they give up before trying, I have found myself saying stupid things like, Oh I will be ok. Or maybe I say, it’s ok, I know it’s hard. “Wouldn’t wish this on anyone”! Once in a while I muster the strength to tell someone how they can actually help me. My strength is limited these days.
When I saw your comment about how people expect to be comforted by you and the burden is on you to make them feel better it hit a familiar cord in me.

my husband was just diagnosed with prostate cancer I wanted him to talk to a radiologist and several surgeons my husband wants surgery told my mother in law we were meeting with a radiologist my mother said why was I prolonging this and wanted I wanted him to be sick and that I wanted it to spread I know shes afraid because she lost another daughter to cancer and has one suffering with it but this was just too much then today she says shes comming for his suregery and that while shes here she wont talk to me shes only coming for her son how would you reaction I broke down crying about it to my husband

I hope that I would never be so stupid as to presume that a sick person is responsible for comforting me. I do remember, however, that a couple years or so ago, my sister phoned to tell me that she was diagnosed with breast cancer. I’m not sure, but I’ll bet my first words were: “Oh my G-d!” She proceeded to tell me that it was not caught as early as we would like, but that it wasn’t caught hopelessly late either. She told me that she would get chemo and lose her hair, etc. Then she could hear me crying over the phone, and she immediately spoke to me in a very comforting and compassionate tone. I don’t think she was put off; I think she appreciated that she’s important to me. I told her that I was sorry for falling apart, that I thought that I should be strong so as to comfort her rather than the other way ’round. Maybe I was afraid that the tumor(s) would kill her, but I also remember thinking that even if she survives, I just feel so sad for anyone who has to go through all the unpleasantness of the treatments. Fortunately, she had successful surgery with clean margins (she lost part of a breast and several lymph nodes), and after chemo and radiation, she’s doing well. She will be taking daily Tamoxifen for a few more years. We think that she has it beat, but of course her doctors will be watching her closely.

Thank you for replying to Sharon’s question. I felt tearful and guilty thinking of inane, thoughtless comments I’m sure I have uttered. I intended to look for a post that suggested better things to say or write. I’m sorry. Can I even write that you remind me to notice moments, any moments, more often and more intensely?

Those of us who have never walked in the shoes of a person with cancer can not possibly know what it’s like. I’m sure that I’ve unintentionally said some things to people, while trying to be supportive and/or comforting, thay could’ve been perceived as stupid or hurtful. I just hope that those people will give me some grace and know that I care, even if I put my foot in my mouth while trying to love them.

We do give a lot of latitude in the moment. And should. But that doesn’t mean we shouldn’t later use those things to talk about ways to be better. Most people want to learn what to avoid and what to say. That’s why I share these comments. I think that it makes sense to discuss both. Some of these reactions are far worse than others, by the way.

I don’t know that I think “meaning well” is enough of a blanket excuse for some of the very cruel things that are sometimes said. I am sure they have given you the benefit of the doubt as I do, but I still come back to awareness and education. If we don’t talk about the bad and the good, how can we change?

This is a wonderful post, and a subject dear to my heart. I lost both of my parents as a teen—my mother to cancer—and though it’s been a long time (no, I didn’t get over it in a year) the memory of awkward condolences still lingers. Not everyone is religious, nor do we all feel that “there’s a reason” for everything. Unless you know the person you’re consoling would appreciate to know they’re being prayed for, it would be best to say something else. My personal favorite: “but you know they’re with you every minute now.” No, no, I don’t. It would be nice to think that, but right at *that* moment, I just wanted to miss my mum. I’m not saying it’s easy to know what to say, and I know how well-meaning loved ones normally are (although some of the examples above are breath-takingly rude), but the number one rule for me is it’s not about ME. Because it comforts ME does not mean it will comfort the person who is grieving or ill. Think about THEM. It’s still difficult to know what to say sometimes, and I don’t pretend to have the magic words, but genuine compassion and supportiveness is usually appreciated.

I know we can count on Lisa to provide a list of the heartwarming, positive things to say (although I love the list of the stupid ones). The best response to my crappy news came as a simple phone call. This mere acquaintance… a colleague of my husband’s… he just said, “Fuck, Britt… FUCK. I’m so angry. Should we go get drunk?” It wasn’t the words at all, but the honesty and real I-know-this-sucks-and-also-that-I-can-do-nothing that made me laugh and know he cared.

I don’t know if it’s the WORST, but one of the most common responses we Pink Ribbon gals get is, “Well, at least you’ll get new, perky boobs!” Yes, the Silver Fucking Lining. And thanks for trashing my current body and demeaning my loss. And for some reason I find this very annoying: “You should keep your hair short! If I could have short hair like that, I totally would.” Nope. No, you wouldn’t. So take your chipper attitude and unaltered body right on out of here.

And, as you touched on, it’s not just well-intentioned (giving benefit of doubt here) folks who say these things either. A few years ago, I took my newly diagnosed Dad to a “what to expect when you’re getting chemotherapy” class at Georgetown University Hospital, designed to help patients and family members.

I knew I made a huge error in judgment when the perpetually smiling nurse said some patients look at cancer as a gift, because after their treatment, they really appreciate their lives.

I’m going to stick myself out here in a huge limb and say that the “cancer/illness/tragedy is a gift” remark is not entirely without truth. I say this because, in my 30s, as a single woman, I got pregnant by accident, but I was glad. My little boy was stillborn at full term, completely unexpectedly. I went into hospital expecting to have a baby and came home alone. It was TERRIBLE, believe me. And yet some truly good things came out of it. (It’s a long story what they were.) I also once had a friend who was separated from her husband when he developed a rare and terminal cancer. He said to her at one point “This is the best thing that ever happened to me”. For him, there was something beneficial in that experience (I think he had always been kind of disconnected from his feelings and from life, and this experience really changed things in a positive way). This is not to say that any of us would wish to have bad things happen to us, simply to have a “growth experience”. But for some people, once we’re stuck with the fact that the bad has happened, there can be positive things that come out of it.

Still I agree that a blatant “cancer is a gift” comment, without any qualifiers, can seem pretty weird.

It is good to know that some good can come out of cancer but it is one thing for the patient to feel and say that the cancer is a gift, but completely unacceptable for anyone else to tell the patient, or the patient’s family, to look on cancer as a gift. (My mother, father, husband and two friends have been treated/are being treated for various types of cancer.)

With respect to the “calamity is a blessing in disguise” notion, I may agree with that to a certain extent, since I plan on trying to see if my breast cancer diagnosis is some sort of “wake up call” to see if there was anything “out of kilter” in my life I felt was overdue in addressing / changing. It would be interesting to see how the owners of a certain cat lover’s specialty store in Calgary that unfortunately burned down as a result of a fire at the strip mall at which they were located would react if anyone told them how the fire was a “blessing in disguise” since the strip mall they were previously located at was slated for redevelopment.

Thank you, Lisa. I know that some folks are really trying to be caring, but some are merely very trying to deal with. Even positive comments can be disturbing. My least favorite is ” You are my hero.” Now that I am dealing with post radiation pain, I am wondering what new comments that will bring.
Meg

My mum is dying of cancer at the moment , prob has weeks left.its a very hard time obviously. My best friend has told me THREE times about how her dad screamed in agony when he died of cancer last year !! How could she think that would help me ??

so having read the blog I come away equipped with only one example of what is acceptable
“it is so good to see you”
please keep working on the positives, I do know how hurtful and unhelpful it can be when someone comes out with an insensitive remark
but lets try and come up with alternatives
but lets educate

Dear anonymous: The last line of the post clearly states I’m writing a companion piece with suggestions for positive things to say. That’s the reason why there aren’t examples in this piece; that’s not what this piece is about. I promise, as I said, I’m working on it. Some understanding for the time and energy it takes for me to get these posts up would be one way I would suggest you might be supportive and helpful of someone with stage 4 cancer.

I hope I educate every day. Since you say “let’s educate,” if you’d like to start that ball rolling with some suggestions in the meantime, feel free.

I find some of the comments shocking but I have heard similar from other women .People do need to be equipped with what is helpful to say , so far I have learned that “It is good to see you ” is acceptable . please keep up the good work of generating a range of acceptable responses

For those who seem mystified as to what the Don’t Say This list tells them about what to say, let me suggest a couple of takeaways: prescribing an attitude is presumptuous. How to not be presumptuous: ask a question about how the person is handling things, and perhaps a follow-up question about how you might help them.

Comments that obviously show you are trying to find a way that the person with cancer did something that you did not do to assure yourself that you won’t get cancer: well, there’s no kind way to “other” someone, so keep those thoughts to yourself.

Free-associating about the word “cancer” to come up with every treatment or death horror story: also insensitive and unkind. Relate to the person about another topic if a cancer terror litany is all that word suggests to you.

Be kind. Try to be thoughtful. When in doubt, ask gentle questions. It’s a start.

My favorite bad question is still “do you smoke?” It usually means ” what did you do that is different from me so I can assure myself that I will not give myself cancer like you did?” I now answer that or any other question about lifestyle with ” I don’t answer that question anymore, it makes it seem like that is laying blame on the patient”.

I just had a lab tech at MD Anderson ask me that while drawing my blood the other day. One time of many… As a lung cancer patient, “Do you smoke?” Is the standard question. I’ve heard it countless times. Yes, it feels very blaming. Even though I’m not a smoker, that shouldn’t matter. Would I deserve it if I did?!

[…] Bonchek Adams offers a retrospective of the many responses to cancer patients that don’t quite deliver on their intent to be supportive. Posts like this can be a huge help to someone who feels unheard or disempowered by remarks that […]

My all time favorite is ‘How long do you have?’ The one I hate the most is the story of their neighbor’s cousin’s dogwalker’s nephew’s piano teacher tried that same treatment but they died. But check out this video on youtube by a woman who had breast cancer on what people say to her: http://www.youtube.com/watch?v=PyP3qUdOZW8&feature=player_embedded

I had a therapist tell me if we dislike or feel ambivalent about a body part, then sickness will grow there. I have stage 4 breast cancer that spread to my liver. To him this was because I disliked my breasts and belly. I was speechless.
I left early and never went back. As I write this, I wonder what he would have made of my brain mets. I’ve always liked my brain.

I was advised by a massage therapist not to refer to my DCIS as ‘breast cancer,’ but instead as a ‘breast pimple.’ She explained that not using The C Word would rob it of its psychological intimidation. … She was great at working the kinks out of my back, at least!

This reminds me of a conversation I had at the Sabbath lunch table of a most wonderful couple of friends / neighbors. The hostess is an oncologist, and her husband is a technical writer. The oncologist herself has had breast cancer, and she has been so open and willing to help me and my family understand my sister’s breast cancer. I asked her if I could ask more questions because I am concerned about the possibility of my sister’s (or any patient’s) cancer recurring. I am also concerned about my uncle who has metastatic prostate cancer, and I am also retrospectively trying to understand better what happened to my late step-mother and her late sister who both had breast cancer. The doctor was as wonderful as ever with her willingness to educate me. However, some people at the table said that we shouldn’t use the “C-word” because words have power, and to use the word give it power. I counter-argued that we are letting the word have way too much power over us if we can’t just use it in a frank, straightforward discussion of life’s problems which we all want to address.

I was treated for breast cancer four years ago, and have had NED since. I have a neighbor who asks me often if I think the cancer will return. My reply is always, “I hope not”. What a thoughtless question.

I was told I was destroying my family by chosing chemo. It’s just a money-making scheme, you know? But I could just fly to another state, take some homeopathic pills 2395720957 times a day (that cost a lot of money insurance would NOT cover) I’d be healed and not lining pharmaceutical and doctor’s pockets.

I had a lot of side effects with chemo. Someone once told me that her mother had chemo and smiled through the whole thing, and if I just smiled more, maybe I’d feel better too! I kindly responded that if I didn’t have side effects, I’d smile more, because I was positive smiling didn’t cure puking, pain, swelling, etc.

I also love it when people say “Well, my breasts don’t define me so I wouldn’t mind getting them removed.” Um, mine don’t define me too, but I’ll tell you what, it is mentally and physically hard to deal with a mastectomy.

Let’s not forget the “Didn’t you breastfeed? I nursed my kids. So I won’t get breast cancer.” Um, yeah, actually I did. But even if I hadn’t, that’s not why I would have gotten cancer.

The funniest moment – I just had to come home and laugh. Someone told me “If you need anything, anything at all, you just let me know. I want to help.
To which I responded, well the biggest thing to help out is a dinner. Her – Oh. I don’t cook. Sorry. Can’t help with that. But I really want to help! Me: Well, you know, if my kids could come over to play with yours while I’m a doctor’s appointment, that would be great. Her – Yeah. I don’t really like having other children around. So that’s probably not a good fit. But, really, tell me SOMETHING I can do. I mean it. Anything. Me – Um, I mean, if you want to come help me clean the house. It hasn’t had a good cleaning in a while. Her – Oh sweetie, I don’t even clean my own house. Is there something else because I want to help?
I get she was trying to be nice, but it was pretty clear to me, she didn’t want to help, but felt she had to say it. So I finally said maybe bring me a magazine to read (though she said perfect! she never did). Just don’t offer to help if you don’t want to.

And my best (worst) someone we barely knew said to me “You know, if you die, and your kids ever need someone to open their hearts to, they can call me anytime.” Um, thanks?

So funny and awful!
And in this response are some good clues about what people can say and do that will be welcome: help.
Offer real help, such as a meal delivered (and the serving bowl/lasagna pan/tupperware picked up afterward – preferably there was a note on the meal with instructions for heating, and orders not to clean anything afterward but just leave it on the porch!).
Or what would be a good time for me to come and vacuum your rug or water your plants or weed your garden (name one finite chore — you can always sneak more help in while you’re there!).
Or organize play dates for the kids.
Or bring magazines.

I am just about to begin chemo for the “bad” kind of breast cancer. I am in complete agreement that what is most helpful is to offer some very concrete help, as mentioned above. Being someone who has never had an easy time accepting help from others, I have found it is much easier to agree to let someone come over with some food than to come right out and delineate to friends what exactly they could do that would be helpful.

What has been most hurtful to me are the silences from friends whom I told about my diagnosis. In responding to an email from a friend/colleague, I told him about my diagnosis, and never ever received a response. Another friend was told by my husband and she chose not to contact me at all to say anything. I questioned my own feelings of being hurt, and wondered whether or not a reply to a newly diagnosed cancer patient falls into the category of just basic good manners. A full month after this friend heard from my husband, she called me to apologize for not saying anything. She said she had been confused, and in listening to her, I felt extremely sorry for her. Her own self-absorption prevented her from making a meaningful connection with me, and I suspected that pattern may pervade even more in her life.

Finally, in my research, I have encountered many who are intending to provide helpful information, but I have concluded that unless you are a person who has or had had cancer, or a doctor working with cancer patients, it is best not to write a book about cancer.

I really don’t understand people even those that are/were friends. Why offer help if you don’t really mean it.

I didn’t really tell anyone about the BC unless it was face-to-face. I didn’t want to call and tell friends about my Dx. After my lumpectomy I finally emailed 4 friends that I just didn’t see very often and of the 4 one NEVER once spoke to me, and in fact was “upset” that I hadn’t told her right away. I didn’t even tell my teenage kids until I was sure of the Dx so why would I tell anyone else. I told my mom, who had BC 14 years earlier. I would see and talk with her husband and son who told me she was upset, and I still couldn’t understand why it mattered when I told her. I finally decided to let the hurt go and de-friend her on facebook with an explanation that this was about ME not HER.

I had a couple of people who offered to drive me to chemo last summer only to have the first oversleep – I drove myself, and the following treatment another friend become suddenly ill. The only person I could rely on was me, myself, and I. Other than my first treatment that both my mom and aunt came to I did everything on my own. Not one person did a damn thing for me even after offering their help. I know it’s not easy to specify what we need but like someone else said, a meal or several meals is a great help.

I was, at least fortunate enough to not get many “stupid comments” and I hope to never be the one to ever say one of these stupid comments.

I don’t want people who haven’t “been there” to feel any worse than they already do about not knowing what to say. Even people who should know how to respond aren’t necessarily any better at it. Take this example: My mother was diagnosed with breast cancer and not three weeks later I found out I need a lumpectomy for an earlier stage (atypical biopsy but the cancer question won’t be resolved until the pathology is back after the surgery, which has yet to happen). As it turns out, my MIL is a breast cancer survivor. And yet she hasn’t uttered ONE WORD to acknowledge the back-to-back bad news my mom and I have received. It just goes to show that even when you’ve “been there” it still doesn’t mean you feel comfortable saying anything. I often wonder why “I’m sorry to hear that” doesn’t suffice? Just acknowledging the problem, even if it’s ONLY through a sympathy card, is better than pretending it’s “none of my business”!

So for all those of you reading who are trying to figure out what to say and what not to say — at least you care enough to TRY. My MIL spent her entire career in the medical profession — providing patient care — and it hasn’t made her any more comfortable broaching the topic. Trust me, you’re loved ones don’t care whether you can come up with the perfect words to convey your concern. They care that YOU care. And that — along with a hug — is more than enough.

I also got the most annoying and ignorant comments. Two that I’ll never forget: Another New-Ager who assured me that if I didn’t go back and forgive everyone I held grudges against, “the cancer WILL come back.” Another idiot friend sends me a link about baking soda shrinking cancerous tumors. Not only is this a load of crap, but she writes, “For your consideration,” after I’d already had a lumpectomy. What was I supposed to consider? That I’d made a mistake? This same friend wrote me a “funny” song about chemo right before I was supposed to start treatment, like an SNL sketch complete with bumpkin accent. I made her stop and very firmly said, “I don’t want to hear it. It’s NOT funny.” When we get cancer, it seems like every idiot in the universe opens their mouths. SO GLAD you posted. I thought it was just me who blathered on about this.

It’s difficult to fathom. My heart breaks for the woman who was only allowed to be sad one day a week. I understand that, as I have to hide my tears and sadness all the time to avoid family getting discusted with me. It’s hard enough having cancer, going through treatment and living life with fear let alone the insensitivy and ignorance that we have to deal with. This is all mind boggling and the reason I keep to myself and don’t attend functions with people who I have not seen or spoken with since my diagnosis. I would melt down if I were on the recieving end of these mindless statements and questions. I’ve learned to surpess it all and be quiet. Thank you Lisa for speaking up and speaking out. <3

Such good discussion and a testimony to the pitfalls of human communication. What may seem insensitive and hurtful to one person, may be comforting to another. But anything that diminishes or squelches the difficult, raw emotions of cancer isn’t helping. I think many people who end up putting their foot in their mouths are responding from their own place of fear. “It’s good to see you” seems like a good thing to say. I would add “Thinking of you” as a good parting comment. I am also one of those who appreciates hearing “I am keeping you in my prayers,” especially if it is coming from someone who is sincerely faithful. It doesn’t seem empty, but rather their effort to throw some positive energy into the universe. Thanks for this great forum Lisa.

Insensitivity is not confined to illness. When I was facing eviction and had a looming court date, I got a bleeding ulcer. I was a mess. A friend came over and when I said, “I’m going to be evicted, where will I go, what will happen to me?” He replied, “Think of it as a new adventure.”

makes me laugh. i have had some funny ones.
in an email from a woman in town after i had a 104 fever on christmas day: “Do you watch the show Parenthood? The mother in that (also going through chemo) had a fever for Christmas as well. She went to the ER.” Yes, my life is JUST like TV

and a totally insensitive one:
a good friend telling me what a blessing it was that an acquaintance of hers had “FINALLY died (from leukemia). her children had just watched her be sick for too long.” wasn’t just insensitive to say to me but made me realize that she and i are worlds apart.

I have probably been guilty of the “what’s the prognosis?” one. It is hard to know the right thing to say though. I do try to stick with the “I’m sorry. Let me know if/when I can help.” I don’t do meals either but I will help raise money, contribute to a bake sale, watch the kids once in a rare while, or just be there to listen if I can.

Please, please do not ask about prognosis. What if the prognosis is not good? Then the person not only has to say that, but has to deal with your emotions when you react to that news. If the person with cancer wants to share prognosis, they will. Please don’t ask. It’s not helpful to ask. Your last sentence is on the right direction. Offer specific ways that you personally can help.

Thank goodness for this website. I grew up in a loving but pretty repressed household. We never talked about anything “sad” and difficult topics like illness were never discussed. As a result I grew into an adult who just shut off completely if someone told me they had cancer. I didn’t have the skills to deal with it. I eventually realised this and tried to be more engaged with friends who had cancer…..however, my idea of “being engaged” was…..you’ve guessed it…..to ask about the prognosis. In my primitive little head, I thought that going straight in with that question would show that I was there for that person, no matter what they wanted to talk about. I NOW realise that asking about prognosis is going way too far in the other direction and is a pretty intrusive thing to ask someone. Thanks to this website and people like Lisa and Karuna, I am becoming a lot better educated and will be able to be a better support to my friends. Sending you all love and best wishes.

Another excellent post on an important topic. The thing that really got to me was the person who was telling you the perks of dying young. STUPID is right. People say all kinds of nutty things to those with cancer. It’s a damn shame.

I’m rather blown away by some of the things you wrote, especially by people in the healthcare field. Dr. Joe and his crew never say Catherine is cured…they tell me they don’t have a crystal ball that tells them the future, but today there is no cancer. Love and hate the honesty. Anyway, the 2 things I get about Catherine, and I sometimes want to scream about them: 1) you actually worried that she might die? (um, well, yes, my kid was diagnosed with a systemic cancer that would have killed her within the month w/o treatment and she was checked for relapse during treatment more times than I care to remember); and 2) now she’s all better and all is well going forward (no, she is at a higher rate of developing cancer again (any cancer) and there are late term side effects that she will have to deal with the rest of her life. Will I take the late term late term side effects? Absolutely, because it means she is here to have them. I just wish she never had the cancer in the first place as it changed our entire dynamic and the way I look at my kids whenever they have a bruise, are tired or have headaches.

My beautiful Mum passed away nearly three years ago from ovarian cancer, but when she was really ill and was confined to a wheelchair I convinced her to let me bring her out for a walk in the fresh air (she was embarrassed to be in the wheelchair) but she let me bring her. She was really enjoying being out and about and we were having a lovely chat to some neighbours when another remote neighbour passed by and said hello and then proceeded to tell my mum how much weight she had gained on her face (clearly he had never had cancer and taken steroids). Just so insensitive and it made my blood boil, but we managed to make light of it and carry on. It could so easily have put her off going out which was a great joy to her, I just wish people would engage the brain before they say anything and just try to say nice things, it’s not hard after all.

Wow, I am sure some of these were made by people who were trying to be helpful but so many of them are mindblowingly insensitive. My father chose not to tell any one outside of our family that he had stage IV prostate cancer because he did not want his conversations/ relationships with friends to be different in any way. We felt a little mixed about his choice for a number of reasons. Reading this post makes me realize how many asinine comments he probably avoided. It comforts me a bit to know that he did not have to suffer through all sorts of awkward/hurtful moments with friends and acquaintances. Thank you.

My mother, when I told her about my husband’s brain tumour, “It’s all the stress you have been putting him under” and she herself is a cancer survivor! Made me wonder if she blamed me for her tumour too. With friends/family like this, who needs enemies?

These are amazing, Lisa. I had a few that really blew my mind. One was: “Well, it’s not like breast cancer can kill you. It’s just in your breast.” (Does this person not realize the whole point of invasive cancer is that it SPREADS? I guess the answer was no.) Mostly I found it insensitive when people wanted to know WHY I got cancer–as if I even knew. Questions like: “Was this because you take anti-depressants?” Anyway … this was quite the list. Sometimes there aren’t words when you encounter such things. And maybe people will read this and realize how important it is to choose their words carefully …

I heard most of those when I was diagnosed and I always felt myself putting up walls when I could tell someone was going to comment or ask about my diagnosis. One day I was at a camp that I grew up going to. I was just visiting b/c I had to start radiation the next day. A little 10 year old girl came up and asked me what happened to my hair and I told her I had cancer. And she said, “Oh, I’m sorry you have to go through that.” And she left it at that. I was thinking to myself…why can’t adults be that intuitive?

After I was diagnosed with an aggressive form of breast cancer, I decided to take a medical leave from work during treatment. I met with my main co-worker, supervisor, and head of facility (all women) to discuss situation and plans. I was nervous, scared about the aggressive cancer and still in process of gathering information. As I was telling them what I knew I started crying as I was trying to come to grips with my current situation. The head of the department looked at me and said “Well it’s not the end of the world”. I felt so foolish for showing emotion. For some reason I think about this almost daily as it bothered me so much.

Perhaps she was trying to reassure you that you didn’t need to feel guilty for leaving work? Ye gods, what a hopeless comment!
I suspect she thinks about it almost daily too, and says to herself, “I can’t believe I blurted out some dumb thing like that…”
Thank you for telling us about that Patti — it might keep someone from ever saying such a ridiculous thing to someone going through a difficult time.

Yeah Lisa, i think I’ve heard most of those and more. I loved it when a homeopathic ,whom My family has a lot of faith in, suggested my cancer could have come because I didn’t feel loved. Everyone has an opinion. Lately I just seem to be asked advice from other ladies with BC and I like to help them out and put them at ease. Many of them are low stage and sometimes they give me a pity look when I tell them of my Stage IV Mets. It doesn’t bother me very much anymore. I’ve been dealing for over 2 years and will keep on. I actually find that some people/friends don’t know what to say and kind of back away. This is when you discover who your true friends are. The “strong” and “positive” comments can get redundant but I know they mean well. I am strong too, as are you and anyone else fighting this scourge. I think I hate the pity face and back aways more than words. (It’s not contagious you know) Good blog piece.

My dear friend has had stage IV BC for 19 years now, so far. She has no idea how she’s done it; she has plenty of anger in her from time to time, doesn’t eat perfectly, and thinks a lot of negative thoughts, etc.
I guess people are afraid of the idea that we can be powerless to vanquish cancer with our thoughts.

I am going to add one to the list. I am now 54 and have lived with BC for 32 years. I have been stage IV since 2006 but had BC twice before at the age of 32 and 41. So I was 41 with 2 young children when I had to tell my boss that the cancer had returned and I needed a mastectomy. He was extremely religious. He told me there was nothing I could do that this was the will of god. So I told him that may be he could ask god to leave me alone and forget about me for the next couple of years. …..He also told me that I could come to work with a wig that my co-workers were all adults….I returned after 10 weeks and on the 2nd day he asked for a complete update since nothing had been done in my absence. I felt I was in the twilight zone.

I have a chronic, incurable lung disease which requires me to wear oxygen in public occasionally. A week ago, a woman who had climbed over me a number of times in the auditorium where we were enjoying a concert, said to me as I bent to adjust the flow on my portable oxygen, “That breathing machine is here in my way again!” No smile, no joke.

It is sometimes very hard for a person to know what might be comforting, even with regard to themselves. I am not a religious person and do not “believe” in the effectiveness of prayer. Twenty years ago my husband was dying of leukemia. I left updates about his status on our answering machine so I didn’t have to return calls late at night. One day there was a message from a stranger who had dialed our number accidentally. When she heard my update about my husband’s condition, she said they put his name in their prayer circle and would pray for him every day. To my amazement, this brought me to tears – that someone would take an action they believed in for a complete stranger.

Lisa, what a magnificent blog. This is my first visit. I have just completed lumpectomy, chemo and radiation for low stage invasive breast cancer. Like many of us in the cancer community I have received many of the above insensitive comments. One person kept me informed of her dog’s chemo for cancer. Yes, the dog and I were going through it together, although we never met.

We don’t seem to have a template for how to gently respond to someone experiencing such a scary episode that changes one’s perspective forever.

Before I had cancer I made some of these mistakenly insensitive comments myself. How I cringe when I look back on that. People do back away because they don’t know what to say, how to help, or how to remain connected to someone going through something so terrifyingly life changing.

The best things for me were friends and relatives who regularly kept in touch by brief calls, emails or even texts. If you don’t know what a person is experiencing because you are out of touch, you can’t know how to help or what to say. And it does help to just think of something helpful to do and just do it. And it doesn’t have to be a big thing. I am still the same person, all the things I cared about are still valid. I am still me, just having a rough patch. Meals (if I can eat), books, flowers from your garden, cards, letters, magazines, emails, links to cool blogs, DVDs, your photos and news, and sensitive, brief visits (asking for permission first), were all helpful. If you don’t know me well, a card is always appreciated.

Asking if someone wants to talk about their illness and how they feel is respectful. There is lots of other stuff to talk about once that is established. I want to hear about your life too. Balance.

Life goes on, and I hope for the best. I don’t feel strong, or special, nor do I feel like a warrior or hero. Just a person dealing with what is happening, as Lisa and other cancer patients are. Its great to know that you care about me, want me to feel better, can give me a hug, support my choices, do what you can to help, and stay in touch. “Its good to see you” works just great and so does “I have been thinking about you, and here you are!”

Lisa, I guess all friends respond stupidly when given the news. These were some of the comments from friends and acquaintances when I was diagnosed with breast cancer – I put them in the form of a “list poem” that I call “Responding to Bad News” although “Stupid Things People Say” is even more apt. I’ve just discovered your blog and I’m profoundly grateful to you.

My cousin had it four times. Thank goodness it was never that , but you know, each time it was scary as hell.

I’ll be 86 this year and I’ve never had it, thank God. It’s better to live and not have it.

You’ll be fine. You’re a tough old bird.

You don’t deserve this.

I couldn’t call when I heard. I’m such a coward. I can’t bear bad news.

Just remember, you’ve lived a good life and your kids are grown.

Don’t worry about having your breasts cut off. No one is going to see them except you.

You’ll be okay. It’ll be good news. You’ve been through too much already.

This is so unfair.

It’s probably just scar tissue they’re feeling.

God never gives us more than we can handle.

Let us cook you dinner, then Reiki you.

Are you able to write?

I’ll sacrifice a goat for you.

I don’t dare tell you about my troubles. They seem trite by comparison.

I’m sure it’s just a cyst.

You’ll have chemo, you’ll get a fabulous wig and lose weight.You’ll look great.

Worst thing said was from a family member who byoassed saying anything comforting and proceeded to tell me in detail about a friend of hers who had cancer much worse than I did and so I should be grateful. Ya. Turned out that first diagnosis was a mix up of pathology reports and when the second diagnosis came a few months later I declined phoning this family member to tell them. I just couldn’t summon the emotional energy.

I had a client tell me that I shouldn’t have had a mammogram, because then I wouldn’t know that I had breast cancer and could continue working and seeing her. A plastic surgeon told me that I wasn’t suitable for immediate reconstruction but if I was “still around in year”, she would see me again. That was three years ago and I found another plastic surgeon.

Lisa, I too have heard a lot of the stupid things. I remember when I was looking for the words to say to tell my co-workers about my Stage IV diagnosis. You told me to be honest and tell people what I want them to know. Thank you for the advice. I pulled my closest work friends into my office one by one and told them about the cancer coming back. I received a lot of hugs and support that day. I asked each of them to please continue to stop in my office and chat, ask questions if they had any and please don’t avoid me. If you don’t know what to say, come in and say, “I don’t know what to say”. I have a coworker that has the reputation of being rather grumpy. Every day, every single day, he makes the effort to walk by my office and says “Good to see you here Barb” and I respond “Good to be here Roger”. Makes me smile every time! Thanks Lisa!

My favorite things that people have said to me (diagnosed with stage 1 breast cancer at the age of 32) are:

I’m so sorry.
That sucks.
Shit!
Oh my God, that’s terrible!
Do you have a treatment plan?
How are you feeling?
Is there anything I can do to help?
I don’t know what to say but I’m here for you.
You’re in my thoughts.
Place x/Gilda’s Club/Immerman Angels/Stupid Cancer/Young Survival has free programs for cancer patients. I’ll send you the link to their website.

I also appreciated people sending cards, flowers, books, well wishing emails/texts. Acknowledging that cancer is a really hard thing to deal with and showing concern for me as a person is all good. Also helpful, not squirming too much and changing the subject when I say my skin is a wreck from the radiation, I’m having hot flashes because of the tamoxifen, I’m scared about the possibility of ever having children because what if I die, what if they get this cancer, and I won’t be able to lactate on the cancer side. If you ask how I’m feeling or how I’m doing, please really listen if I feel the need to tell you the crappy truth. I find that the most helpful stuff isn’t trying to cheer me up or bring me down, but rather it’s a willingness to be present with me in my profound discomfort. YMMV.

Unhelpful things:

Saying nothing.
Implying in any way that my illness is my fault because I didn’t eat enough blueberries or have a positive attitude or whatever. No one really knows what causes breast cancer.
Telling me you know exactly what I’m going through because your grandmother had cancer in her 80s or because you had a biopsy of a fibroadenoma . (If you in fact did have breast cancer at a young age, you get to commiserate, but otherwise, please don’t.)
Saying “but you’re going to be fine right?” My prognosis is good for the time being, but most recurrence rates are for 5 years, and I’m hoping to live a lot longer than that. No one really knows if this will come back. I’m in no position to reassure you about it.
Talking about my “cancer journey” as though this is some kind of hero’s quest. (Similar to the “gift” thing.)
Telling me about someone you know who died young from breast cancer. I had someone tell me this while I was in the waiting area before having a second biopsy in the other side after I had already been diagnosed, but before I knew the extent of my disease. That was not helpful!!!
It’ll be like this never happened (an oncology resident told me this–I’m pretty sure I’m forever changed by this disease and I have physical and psychological scars to prove it.)
God has a plan/everything happens for a reason/cancer is a gift=not helpful!!!!

I don’t expect anyone to be perfect. I understand that no one has the magic words. Please say something, even if it’s the wrong thing. I’ll forgive you if you’re making an effort. But please don’t try to teach me a lesson or minimize what I’m going through. But really if you show honest concern, I’ll appreciate it, even if you make mistakes.

“I don’t expect anyone to be perfect. I understand that no one has the magic words. Please say something, even if it’s the wrong thing. I’ll forgive you if you’re making an effort. But please don’t try to teach me a lesson or minimize what I’m going through. But really if you show honest concern, I’ll appreciate it, even if you make mistakes.”

I heard the exact same thing when I was diagnosed with malignant melanoma. It was THIS, finally THIS melanoma that would help me balance my job as a doctor and mom. People needing to be okay with the diagnosis, needing distance from the illness only to talk about the lessons. Before there was even time for me to learn them….

I will say though, that I do struggle what to say sometimes to my dear friend with stage 4 cancer. I’ve said, “I’m so sorry,” when the bad news comes over and over and over, and always try to offer help (specifically sometimes as to take away the burden of her thinking up something for me to do) and then I do run out of things to say.

But sometimes, so many of these comments stem from sadness, I think. I would suspect many people who utter these ridiculous things just ache and have no good experience expressing their sincere emotions…

I just found this site tonight. I was diagnosed with Stage 1 BC (both DCIS and invasive) in Sept 2010, had a lumpectomy, chemo, and double mastectomy/reconstruction (March 7, 2011 – wow, 2 years ago now). I am grateful to be cancer-free and healthy, but think about cancer every day. I am deeply moved by your website/blog, Lisa. Your articles and the comments are so alive and vibrant. This is my first time participating in a cancer blog (or any blog). In some ways, I still can’t believe I had cancer. That may sound strange, but the experience still seems surreal to me. While going through treatment, I got the comments about so-and-so having cancer and what happened to them – I couldn’t wait for people to shut up! That’s why I didn’t even want to join support groups. I didn’t want to hear other people’s bad news because I was trying to hold on to myself and find peace of mind. Thanks for listening.

I think that you have found a very effective way of dealing with the stupid things people say. How do think think people come up with this “stupid” stuff?My feeling is that people have been misinformed or totally un-informed and have no idea how to say, “i am sorry and shut up” Rabai Kushner’s word.

I ran into a fellow nurse I know who has full knowledge of my breast cancer and knows I’m in the midst of chemotherapy. She did not asked how I was but immediately launched into a very detailed account of her dogs health issues, tumors here and there, which ended with him being euthanized. I extracted myself from the conversation at that point and headed home. I’m still amazed by this encounter, sure I’ve had to hear a lot of cancer horror stories or cancer inspirational stories but this was my first doggie cancer story….and it ended so badly for the dog.
I also get a lot of the “you will be fine”comments because of my formerly excellent health. It’s a great way to shut down any real conversation about my fears. Even worse is the person who tells me “you must be feeling good since your chemos been delayed.” ( due to low blood counts) Of course this was followed by a request for a favor.
A first I felt the need to be polite to people who made these stupid remarks but I’m at the point now where I realize despite their good intentions, they are being rude. I no longer feel rude nipping the stories in the bud and leaving conversations that are avoidant and strange.
One more, then off I go; after my bilateral mastectomy and oopherectomy I had a friend call and say, ” I hear you’ve been under the knife a lot.” What made it slightly worse was that she was chewing on food at the same time.

My sister was diagnosed with Hodgkin’s Lymphoma at the age of 17. A guy she was sort of dating at the time pretty much cut off all communication with her soon after her diagnosis. When she questioned him about it he said “I’m sorry, I’m just really uncomfortable with death.” He was a real winner…

Hello Anonymous i felt very much for your sister. What a horrible thing to say to her. It must have been a body blow to have been told the fact she had Lymphoma at such a young age. Some people are very insensitive regarding other people’s illnesses that is highlighted in some of the comments on this site including yours. Of course some people can handle illness better than some others and some are afraid of it to a degree. But at a time when a person is told they have a serious illness you need understanding support and someone who is willing to stand by you not make stupid tactless remarks. They should engage their brains before they open their mouths.

I am sorry you have experienced this. I personally don’t see a strong person. I see someone that struggled with death and didn’t do it well. I too have something that is a struggle everyday and understand ignorance but they have the best intentions. Your entire article is negative and your entire experience is negative as far as what you have explained here. I ( I am saying I ) am a better stronger person for my disease. I believe God gave it to me to learn like your family member said. It has made me different than most people I know. I pray for you to be okay with life because what comes with it is death. It happens to EVERYONE!!! Morbid? No it is reality and I am okay with talking about it and I cant wait to go to the pearly gates. I pray for you to live a long life and that you will be happy.

Anon 3/13 9:26a sorry for your personal experience, BUT to come on someone else’s blog who is honest and helping so many other people, makes YOU the crazy and NEGATIVE person. Pearly gates? Please. Lisa, you rock!

Those with cancer, especially anyone dealing with metastatic cancer, are allowed to post all their emotions, negative or positive. Staying positive 100 percent of the time isn’t going to make a stage 4 breast cancer diagnosis go away. When my mother passed away from MBC in 1987, it wasn’t because she failed to keep a happy face and didn’t maintain a super duper positive attitude.

What Lisa is doing is educating others on what it’s like to live with a metastatic breast cancer diagnosis, and surprise, it’s not kittens and roses. This is an ugly disease that just takes and takes and takes. Your perspective of cancer is valid, as is Lisa’s, and you have no right to admonish her for her honesty and desire to be realistic. This is her blog, not yours.

She has three young kids, so forgive her for not being happy and excited about going to the “pearly gates.”

Anonymous, I’m pretty sure you haven’t read anything else on my site if you don’t think I am strong or haven’t “struggled with death well.” You may feel you are stronger for having your disease. I, however, cannot view a disease which takes mothers and fathers from their children, friends, and loved ones as a “gift.”

I only talk about reality. I’m glad if your faith gives you comfort. But I do not look forward to death. I respect your view but as someone who is an atheist and has no expectation that anything at all happens after I die, your own views cannot provide me any comfort.

To be chastised for the negativity of my post is actually pretty ironic, since you champion reality. This is the reality of some of the things people have said to me and to others. It’s our reality.

I completely agree Lisa. Anon 9:26 is crazy. They seem like a troll. Yes, death happens to everyone, but not everyone lives life desiring to die, which is basically what they said, when they said, “I can’t wait to go to the pearly gates.” That’s what suicidal people do – desire to die, even if they never actual try to go through with it for whatever reason. In Anon 9:26 case, I’m assuming they won’t go through with it from fear of hell, but if they really want to go to the pearly gates, as they’ve stated, then they could always ask for Yahweh’s forgiveness prior to the act (Proverbs 28:13, 1 John 1:9, & Acts 8:22).

No, I’m not recommending this person go through with it. I’m trying to point out a flaw of reasoning, i.e. fallacy. I wish no one had the desire to die regardless of their religious ideology or any other reason. This person just clearly hasn’t thought this entirely through..

It popped up on my FB too, but the header at the top of the browser or top of the tab, depending on your browser choice, explicitly states, “My new blogpost.” The fact there are no sources, e.g. scientific, news, or any other forms of sources typically found within an article, should have been another give away this wasn’t an article. Finally, the last big give away, in my opinion, is the left links for the website.The second one being “*BLOG*.” Next time, please be more mindful, before you make a comment on the internet or in your daily life.. I know I would appreciate more people doing so. Thanks.

[…] Lastly, a shout out to Lisa Bonchek Adams. She blogs about her experiences “living with metastatic breast cancer, grief & loss, life, and family.” I’ve shed tears reading her searingly honest and courageous posts, and in fact I haven’t finished (and couldn’t finish) reading one of them: The Hardest Conversation. My favorite of her posts so far is the stupid things people say to those with cancer and their families. […]

Thank you so much for this post! I might add that folks who are saying stuff like “oh my I’ve said these kind of things, I was certainly trying to say something helpful, why are all you cancer people so difficult” I say, get over yourself. People with cancer shouldn’t have to take care of you because you said something silly. Or even stupid. Just get over yourself, learn and don’t do it again! Simple.

After sending a few e-mails to parents of my kids friends I received the most insane comment ever. I was asked if the the e-mail was a hoax sent by someone else because another mom of those that received the e-mail said her sister received a similar e-mail that was a hoax. I really wanted to respond, “Why yes, I sent a hoax e-mail to all of you telling you that I would be requesting help with getting my child to his extra-curricular activities during my treatment, but I didn’t ask for money because really, transportation of a minor is worth so much more!” Have I spoken with either woman or asked for their help with transportation for my child? Nope. Nor will I ever again.

A few more months into this i have many more stupid things to report but one that really gets me lately are the people who havent been there for me or my family and they finally call or e mail and launch into telling me how busy they have been (since november, really). Without a peep from me they then make big promises, meals, shopping,rides…they are so busy making promises that they dont realize i finished chemo now, i havent been waiting around for their help and have things set up pretty well with my family and good friends. What sticks in my craw is that I feel like they are being patronizing and rude, i just want to say, Ive been busy too with surgeries, chemotherapy, fearing for my life…What would be an appropriate response to these busy and unreliable friends?

In my opinion an appropriate response is to distance yourself from these kind of people unless you need a gaggle of acquaintances to make yourself feel good. Empty people make empty promises. Why waste your valuable time on them? Just don’t keep up contact, and if they contact you, tell them you don’t have time for empty people with empty promises. Period. End of story.

I think it is better to err on the side of the cancer patient not thinking its funny. Usually i have an incredibly dark sense of humor but with this whole thing im not finding these type of comments funny. What i hear is that the person saying them thinks I am not seriously ill and maybe thinks I am a little lazy and exagerating. Probably not theirintent at all but i think people shoukd let the cancer patient take the lead inmaking inappropriate comments ( or not) and follow from there. When i was in the midst of chemo i wished i could lay around and read but i was unable to concentrate on anything but the simplest tv show so this comment would have definitely hit a sore spot and hurt my feelings.

I never looked for a support group during my treatment last year, although I did correspond with an acquaintance undergoing almost identical BC as myself, our surgeries a month apart, chemo a day apart with the same cycle. I think we helped each other, or at least I feel we did. My main support came from my knitting group and I’m more grateful to them now knowing they were not the ones saying stupid comments, although a few could only talk about themselves. I didn’t necessarily want to talk about me but it was nice to be asked if I was doing relatively well and care enough for my answer. Knitting kept me sane and useful except for the times I was being “lazy” and slept most of the day and night (chemo week and neupogen shots – gawd awful).

Thank you for posting this, I can only say cancer SUCKS and it sucks that anyone has to put up with it. I’ve dealt with cancer within my family for 20+ years, skin cancer and then pancreatic cancer for my dad and BC for my mom. an uncle with liver cancer. It all sucks and there is never anything good about it – cancer is no fracking “gift” and while I don’t care about my breasts anymore others most certainly do and it has nothing to do with looks and how each of us feels about ourselves.

I’m so glad this was posted on a website I visit daily otherwise I might have missed a great blog. Thank you again and again.

Wow. Some really touching words written here…. ‘lots of love.
‘lots of stupid comments to laugh at and… some really ignorant things to cringe at too.

My father passed away from cancer when I was living abroad. He was sick before I left but I said I would return if he needed me and he said I should go. We kept in touch. While I was still abroad, one stupid, stupid person at dinner party learned my father was ill and said to me “Don’t you need closure? You must not care for your father.” I was a little taken aback because I couldn’t believe they said it so I said, “Pardon?” and they repeated it ” You don’t need closure? You don’t care about your father?” I was so shocked I just wanted to shut them up so I said, “Apparently not” and got the heck out of there.

When my mom got cancer a year ago ( I was closer to home during this time), a few stupid comments were said to her:
“You are too old for chemo, you’ll die for sure.”
“If you do chemo, you’re body will never be the same.”
“I thought you took care of yourself?”

And yes, people usually told stories of their friend, parent, dog, cat, bird, that had the same cancer and died… We heard this so many times we started to laugh when it was said…. people are just clue-less.

But there were also some very good people… those who would come by with food or coffee and cakes and good conversation. Those who would take mom to chemo or doctor’s appointments because work would allow us only so many days off. Those who would just visit and enjoy our time together rather than treat mom like she was already dead…. although, we did start to laugh at the people who treated her like she was dead too.

Ive had cancer(s) for over 35yrs of my life…I’m 39 now and I’ve heard them all!
Funny that these comments bother people when in the grand scheme of things, they’re just words and there’s bigger things to worry about.
My daily focus is to make people smile weather it’s saying something funny and offensive or just being companionate to people, it doesn’t much matter to me as long as I can make someone laugh.
Political correctness can kiss my ass, I say what’s on my mind plain and simple.
I march to the beat of my own drum and always suggest everyone do the same thing. Being individualistic weather your sick with cancer or sick in the head is the spice of life, live it , love it, and enjoy every second of it because you NEVER know when your time is up.
Me, I’m like a Time-X, I take a lickin’ and keep on tickin’ 🙂

When my daughter died of fetal hydrops last year, the day we found out treatment hadn’t worked and she was dead inside of me and now I had to birth her dead body, my MOTHER told me,
“now, don’t get upset”
?!?!

also, my parents have told me she died because we had her “for the wrong reasons” and “we didn’t love her enough”, and “she was not a real person anyway, because her soul still wasn’t descended into her body” (amongst other things).

I actually need more therapy to deal with them (& other ppl like them) than with my grief.

Jeez, THANK YOU for educating people in how to be human.
I’m so frustrated with the whole they mean well/they don’t know what to say excuse. To me, it’s a non-excuse.

I’ll try to remember not to say anything at all if someone gets cancer. But I guess that will be an insult too. Oh, here’s one: “maybe since you got cancer, it’s an opportunity to learn that people have no clue what could possibly make you feel better, can’t think of anything good about your having it, but also know if they either say something happy that has nothing to do with cancer, or say nothing at all, that will be the wrong thing to do too.”
I would love to see a very long list of all the right things to say when learning someone has cancer. Oh but wait – that wouldn’t work either – then we would just be saying it because it was on the approved list of cancer etiquette, hence not coming from our hearts, or any genuine sense of……..of………uhm……..of……..well I better wait for the list to come out, and choose the right word from it, before I take a chance & offend someone.

I did write a long post on how to help and what to say (the link is in the piece above) because it was the most requested topic. People want to speak from the heart but don’t always have the right words.

It’s a shame you are so defensive and you view learning and education as unnecessary and contradictory to true empathy and compassion in this case. Most people want to learn how to help friends or loved ones. Reading/using some ideas doesn’t make them any less genuine or from the heart. It means you cared enough to see if there is anything helpful you could do in your desire to be a good friend.

If you already know kind and supportive and truly helpful things to say, you would not need to learn. There are many people who do, but the tone and content of your comment leads me to believe that might not be the case. Without reading the suggestions you’d never know. It was the most appreciated post I’ve ever written and those who struggle for some ideas to help friends and loved ones were grateful.

As a psychologist, I thought that I was a pretty empathetic person, but after I had cancer, I learned that some of the things that I have often said aren’t helpful. The one that got to me the most was “let me know if I can do anything.” Why should it be my job to figure out what you (the healthy one) could do? Offers of concrete help were much more helpful, rides to treatment, prepared meals, etc. The other one that still gets to me is “you look great” because the subtext is you look great for a person who has cancer”, and there is an edge of disappointment that I am not bald and skinny.

A doctor actually used this analogy when questioned about treatment and plan: “well, the horse is already out of the barn.” He was refering to the fact that the cancer had already spread to the bones so the cancer had left the breast (barn).
I mean seriously. Some people should not be in the healing profession.

On hearing the news of my diagnosis with endometrial carcinoma, a very rude and highly narcissistic colleague of mine asked me : “Did you catch it ?” I was so stunned by her ignorance that I did not even bother to correct her. Weeks later she proceeded to tell me that I should perhaps get a second opinion and that I should not look so glum as there are so many more people worse off than me and I would do well to remember that!!

I’m a 31 yr old only child whose mother was just diagnosed with squamous cell carcinoma a week ago.

I’m going home for the first time (parents in WI, I’m in IL) since the diagnosis and after reading this blog, I’m not sure what I should say to her. She is a pessimist by nature and already saying she would refuse chemo (the details of her condition and treatment plan are still in the works) so my dad and I need to figure out a way to keep her positive so she can indeed have the support she needs to fight it. I bought some colored paper and was going to list “reasons why you are a fighter” as well as post some motivational sayings/quotes on their bathroom mirrors, but the ones that came to mind now seem like the ones you SHOULDN’T say “you can do this,”,”stay strong,”

Do you have any suggestions on what I could write? Please keep us in your prayers, I am obviously terrified of the road to come.

A few quick thoughts for you, Joanna. I am so sorry about your mom’s diagnosis. First, you all need time to adjust to the news. The way you react initially is not always the way you feel once you get your feet back under you. She needs a bit of time to not only adjust to the news but also to make this treatment plan. She doesn’t even know yet what she will be potentially recommended for treatment and yet you want to coach her on how to feel. Being supportive does not necessarily mean keeping her spirits “up.” Maybe what she needs right now is support for how she feels, not pressure to be acting a certain way. The best way to support her is to listen to her, and not try to tell her how she should feel. Let her adjust. And most importantly, respect whatever she chooses. We love our families more than anything, but it’s her choice to make how she wants to live her life and how she wants to treat her cancer. It’s enough to deal with these diagnoses without feeling you are carrying the emotional burden of your loved ones on your back too. It will mean that she will know everyone rises and falls on her actions. That’s a huge weight above and beyond the physical and emotional toll she will be going through.

One of the most important things to do is to ASK her how she thinks you could help her the most. I have a feeling putting up signs is not it, especially if you say she is a pessimist by nature. Signs around the house won’t change it if a lifetime of experiences haven’t. Loving her, spending time with her, helping her with things that she might have trouble doing… those might be better. The key is to ASK, really listen, and then respect what she says. Her needs might change (doesn’t want or need help now but needs it in the future) so you have to ask again during treatment.

If she decides to refuse chemo it will be tough, but it’s her choice. Chemo is very hard and is a quality of life issue too. Depending on what they are recommending and what her ultimate details of prognosis are, it’s important to respect what she opts while still encouraging her to see the benefits (as described by her doctor).

Those of us with cancer know everyone wants us to be “strong” and “positive” but it’s what we need to hear the least. It often just makes us feel like people are telling us how we should act because it makes it better for THEM if we act that way. Negative emotions are normal with cancer, especially only a week after diagnosis… how could they not be. Not feeling free to express them may just be one more way she feels burdened by this disease.

Clearly you love her and want to help. THe best way to do that is to ask, and then respect what she says… That’s my best advice right now. She will need time, but ultimately I think that she will be grateful for being allowed to express her emotions both negative and positive. I wish you all the best.

Well, I’m back…I’m a bit overwhelmed by all the cancer support groups, and not really sure what to join or where to go right now. This this place felt comfortable so I hope it’s okay that I post here for now.

I spent the weekend with my mom and it was exhausting, mostly because she is a bundle of nerves and already thinks she is going to die. Never in a million years would I have though that my own mother would look me in the face and ask me that. I didn’t even know what to say. I arranged for her to get a massage, we drove around and did some light shopping, went out to eat and watched a funny movie, so I think I distracted her as much as I could but it’s really hard for me to stay optimistic when she is visibly distraught and already contemplating throwing in the towel before she gets her prognosis/treatment plan. She goes in for her full body scan tomorrow and a biopsy of her actual tumor on Fri so we should know more soon, but any advice on what to do/say when someone is overridden with hopelessness and negativity? I suppose this post isn’t so much different from my first one only this time I actually saw for my own eyes in what a terrible emotional state my mom is in. For every negative thing she said, I had a response to turn it around (ie 12 million people have survived cancer, several of her friends included, and that also includes people whose cancer metastasized) but if there are any other suggestions I would gladly take them…otherwise I see this whole journey going south before it really even begins. I should mention here that the cancer is because of smoking and she did give that up cold turkey so I’m sure it’s not helping the situation. I suggested she get prescribed anxiety/sleeping pills so she can at least calm down a little bit, and the same for my dad. I guess what I’m asking is…is it ‘normal’ to be this negative? I also asked if she wanted to talk to someone who has been through the same thing/professional and she said no because they would essentially be telling her the same things my dad and I are telling her. I also want to mention that although I did try to turn her negative statements around, I made sure not to stifle her emotions either.

Hi… So sorry this is happening. Please remember that you still don’t even know what the exact details of her diagnosis are yet or what her recommended treatment will be. A few days is not enough time to adjust for any of you especially if you still don’t even have a biopsy done or scan to know what her situation actually is.

Yes it is normal to be that negative in that people respond differently and you’ve said she has always been a negative person so why should now be different ? She still is full of fear and anxiety because she doesn’t have all of the information. You can’t expect her to be all gung ho so fast and when she doesn’t know what will be asked of her or recommended yet. My point in my advice the first time is that she may NEVER have “positive thinking” in this and while painful, that is her right.

You say you didn’t stifle her emotions but countered what she said with statistics and anecdotes about other people. This is not helpful to people with cancer. All cancers are not the same. All metastatic cancers are not the same. What matters is individual cell features and just because friends of hers lived (or died) doesn’t mean that is at all relevant to her case. I’m sorry if that sound harsh. What matters is where HER cancer is, how her cells respond and most importantly what she decides to do.

You love her so much but you can’t put the way you want her to act out there as the way to be. Don’t come back with what other people have done. That says to her that she is failing in how she is handling it. When you say these things she will think it’s another way she is disappointing you. Let her be, even if it’s negative. You can’t convince someone who is a mature adult how to change an attitude they’ve had their whole life.

You still don’t have all of the info. Be patient. Just listen even if it’s not what you want to hear. It’s not about you, it’s about her. Asking her doctor about an anti anxiety medication for this window of tests and results and waiting is a good idea. They will often suggest something like Ativan especially for during the scans. This is the hardest time because it is unknown.

You have a difficult time ahead but I again implore you to not try to change how she feels. Let her grieve, be angry, be sad, etc without trying to convince her that she’s wrong (telling her about the millions who live or her friends who did essentially tells her she is wrong in her feelings).

Adjustment takes time. Not days or weeks. And certainly not before she has all of the information to make a decision about what to do. You sound like maybe you need to come to terms with this as much or more than she does.

My heart aches for you and I hope you and your dad can help her in the ways she needs right now. She must be very scared.

Hi, Lisa… I found your blog tonight, thank you for so many inspiring words and for sharing your experiences. I found this post and as unbelievable as these things are – I was SO grateful! I thought I was maybe being super sensitive to what people say to me and I’ve been trying to toughen my skin – but looks like I’m not alone. Maybe these crazy people around me are stupid and I’m not as sensitive as I thought! My hubby is 40, we have 4 kids (13-7) and he is battling Hodgkins for the second time. We are gearing up for a stem cell transplant in a few weeks. 🙁

Here’s my most stupid comments to add to your list:

“How much life insurance does your husband have?”
“If he dies, will you bury him here or back home?” (we live away from our families)
“If he dies, do you think you’ll remarry?” (last I checked, he was still very much alive)
“I think you tell your kids way too much. You are stealing their innocence.”
“Why don’t you just send the kids to your mom’s until this is over?”
“Oh no! That is the same cancer my uncle died from!” (gee, thanks)
“Man. You look terrible. You look like you haven’t slept in days!” (wow. i feel much better now)

….

Unfortunately, the list goes on. Probably the worst ones, that I hate the most and have already been mentioned is how everyone has to tell you about someone who dies! What is that all about??

Ahhhhh… I feel so much better now, very glad to know I’m not alone or overly sensitive. Much love to you and your family.

The dumbest comments I received in response to me telling people about my stage 3C ovarian cancer diagnosis:

– who is your life insurance beneficiary? (from a close family member);
– do you want to be buried or cremated? (from the same family member)
– thank God it’s a “good” cancer (BC 5 year survival is 90%, OVCA – 30%);
– sex will get better for you because now you don’t need birth control (from a male friend about my surgical menopause after hysterectomy/oophorectomy);
– you look so good in a wig, you should keep wearing it after you’re done with chemo;
– you talk so much about your cancer, it’s embarrassing;
– what “chemo fatigue”? just admit that you’re lazy;
– short-term memory loss has nothing to do with chemo. I forget things all the time too.

and my personal favorite:
– I don’t want you to go to hell when you die; let me introduce you to our Lord and Savior JC (I am Jewish);

After 7 years of chemo’s and several major surgeries..brain, lung, liver etc.; stage 4 melanoma, I now have 3 lung tumors; 1 liver; 2 outside spinal cord; and 2 abdominal; my surgeon tried to remove the abdominal ones to help ease the symptoms but had to leave them, they are very large now and disfiguring and uncomfortable…Hospice is wonderful and helping me adjust. I am 61 and just trying to deal with this new normal. By new normal I mean the loss of activities. This blog is so helpful and I’m very happy I found it. I am truly sorry for everyone dealing with cancer and at the same time feel reassured somehow.

My Ovarian Cancer (Stage IIB) was a surprise find during surgery, at age 62, for huge bilateral cyst adenomas. My husband called my workplace to let the ladies know how the surgery went & drop the news on them. 2 weeks later I learned a port & chemo were in my future. One of my co-workers said “bet you wish now you’d had your ovaries removed when you had that hysterectomy 30 years ago”. I replied that no, I trusted my doctor & he did what was best for me at the time, I was not going to waste my time by looking back at “what ifs”. All thru the chemo folks kept telling me to keep a positive attitude, not worry about the steroid weight I “could lose it later”, not compare myself or my life to how I/it used to be, just be happy it wasn’t worse, after all I was alive. Everyone wants to tell me about someone they knew who died of cancer, no one has any good stories. I wore a wig for one day, decided it wasn’t for me & turned to ball caps. People can be so insensitive. I learned very quickly where I could remove the cap in comfort & where people just couldn’t handle the bald head. One would think in this day & time when cancer is so rampant & everyone knows someone affected that we could learn to handle those fighting the fight with more grace. But then we are human, & a very flawed species.

You are a better woman than me Judith…you say “people can be so insensitive” but those comments are beyond rude. I am telling myself your husband and family are supportive and loving…that is all that really matters right now.

Just to chime in on stupid things…when I was going through chemo after lung cancer surgery, my new DIL got mad that I didn’t call to thank her for the handmade card. She still brings it up 5 years later. Hellooooo…..I was sick and tired and scared. A call or visit would have been nice — but neither of those ever happened.

Three weeks into my first diagnosis (started with primary peritoneal-stageIII ovarian , metastasized into brain). my mother-in-law told me she was really worried about Gary (my husband). I really love her and understand but really couldn’t she see how ridiculously hilarious it was??? BTW 3 years into this, I am cancer free but bald.

My big sister was 46 when she was diagnosed with stage IV lung cancer. I felt that any response from people other than I’m sorry was too much or disingenuous. The worst was (and still is) “Did she smoke?” like they wanted to dismiss her diagnosis by placing blame on her. Well, she was never a smoker and had lived a pretty selfless life as a dedicated CNA. So F-you if you want to dismiss lung cancer as a self induced affliction. But I do have to admit when she was first diagnosed I didn’t know what to say either so I know I said some pretty stupid things to her not the least of which was “WE will beat this.” I know of one thing I said that she told me actually helped and that was – “You are not alone. I am with you and here for you – no matter what comes.” I told her that often and at the end when she slipped into a coma I added that she was loved and safe. Just stick with “I’m sorry” people and if you can be sincere add, “What can I do for you and your family?” – then do what you can to bless that person and their family.

Lisa, thank you so much for writing this blog. Even though our circumstances are different, your writing is a great support for me. You obviously truly “get it” and that is a great comfort in times like this.

This comment occurred yesterday and came from an oncology nurse in the well-known cancer center where I am receiving treatment for Stage IIIc ovarian cancer. I am in my fourth round of chemo (carbo/taxotere this time) and I had a severe reaction to the carbo. She came over, observed the goings-on and declared, “Uh-oh, this one’s trouble.” Like I couldn’t even hear her. If I hadn’t been so overwhelmed with the debilitating symptoms, I would have launched myself out of the chemo chair!

I have stage 4 breast cancer. I have found that people say ‘stupid things’, but it is because they really have no idea what to say. They feel badly for you and truly want to let you know they care about you. How many of us have gone to funerals and said something stupid to the family of the person who died? I know I have. I appreciate that folks, whatever they say, that is not ‘well worded’, is meant sincerely. We all will die, the folks who are not ill are just trying, as hard as they can can, to say, “I’m so sorry. ” Give it a rest folks, they are not trying to hurt our feelings – they just don’t know WHAT to say. Give them credit for even approaching you and saying anything – they are trying.

Thank you for this Gerri, my thoughts exactly. You said it so well. I wrote this somewhere else on the blog, but I wanted to repost:

Had a very concrete reaction to this particular blog about wrong things people say. Background: my healthy, strong, beautiful grandson ( I was at his birth as he came to us that beautiful night on the side of a mountain with a strong circle of women surrounding my daughter) was diagnosed out of the blue (his momma found a small lump in his abdomen) with a very aggressive and serious, rare cancer at age 15 months. He’s just finishing radiation, getting ready for 6 months of painful antibody therapy, on the tails of full throttle 7 chemos over the last 7 months, major side effects too heartbreaking to detail, surgery, nearly dying in a coma from post op blood infection, bone marrow transplant etc etc. Our formerly plump and indestructible toddler is a rail thin, bald but joyous and extraordinary two year old now.

I’ve spent weeks in the hospital, sleeping on a couch in the playroom, fearful for my daughter’s mental health (she’s stronger than all of us put together, turns out, and she’s doin it alone: the absent father of the baby has teetered into dysfunction, unable to cope) watching her friends drift away, and mine to some extent as we’ve harbored down with this journey. I’ve been there every step of the way with my daughter, good bad and ugly, and it’s been a heartbreaking and difficult journey. Grandparents must watch two beloveds suffer: it’s like going to an endless crucifixion of your heart and soul.

This has also been one of the most gorgeous and beautiful times of my life. Sorrow and beauty woven into the most gorgeous fabric I’ve ever had the privilege of beholding. My faith in a beautiful design to the universe and every action of every day, every insect and human and waterfall has never been stronger. Every trite thing ever written about suffering is true. It does make us stronger, more loving, more alive, if we let it.

So here’s what I have to say about this blog post: Yes, so many people have said “inappropriate” things. So the hell what. Cancer is about looking beyond the surface, it’s about growing past your boundary and envelope to see what’s most important. Cancer is the most spiritual, transformative journey you can ever hope to go on. It’s a privilege. I’ve come to see chemo as an almost spiritual elixir, burning all but the core miracle away, taking away all control and leaving pure faith behind.

And those strangers or friends struggling to say the right thing, those who drift away for their own reasons: I say look beyond their perceived betrayal, their ineptness and errors of speech or action. Cancer asks us to get in touch with something so much more important. Love. love love love love love. Forgiveness, understanding, peace, growth connection, acceptance.

The struggle of those who haven’t found the right thing to say to someone obviously in crisis/trauma is both heartwarming, awkward, and beautiful to witness. I don’t care what comes out of their mouth. We are all in this together. Look for peace and calm and acceptance in yourself, (which you are doing beautifully by the way, it’s a hell of a process) and you won’t need people to say the right thing. If they put their foot in their mouth, you wont hear that, you’ll see the beauty of their effort, you’ll understand, maybe help them gently towards saying something better next time. It’s a goal, anyway. Blog posts like this can make folks fearful of saying anything. I’d hate to see that happen.

Maybe it’s just this: two wrongs don’t make a right. If a wrong or hurtful or insensitive thing was said, it seems natural to strike back and say it was stupid and wrong of this person. But perhaps by far the better solution would be to stop the cycle of hurt, like a road block. Spin it to a higher place.

Cancer asks so much of all of us. Why not this too? Don’t hear the stupid words coming out of their mouth, look into their eyes and see who they really are: fellow travelers looking for love, acceptance, connection. Doin their best. I know this is easier said than done when we are in the middle of the challenges of dealing with cancer.

I am so sorry about your grandson and pray for his recovery. it like to lie awake at night and wonder if you will live to see another Christmas, another birthday, you don’t know what its like to be bald, nauseous, in pain and exhausted, and not sure that treatment is worth it. Until you have walked a mile in my shoes (and you have not), please don’t judge me or dare to tell me that cancer is a gift. I’ll bet its a “gift” that you wouldn’t chose to give to your other children or grandchildren.

Thank you for your insights and perspective, homa bird. My choices in dealing with the emotions, spiritual growth, and maturing process of this BC diagnosis are similar to how you have described. Your comments have been very helpful to me. Yes I have heard some of the unwitting, unknowing, inexperienced, awkward, startled, fearful comments and suggestions. Yes, it’s made me mad or pushed me to judge the person. But I also know that many if not most people are not very good at feeling their feelings, and even fewer have the ability to get their feelings into words. The hardest thing for me to take is that look they get on their face, like, oh, you’re not long for this world. I’ve only been living in the cancer world since October 2013; in about 10 days I start chemo. We’ll see if my “rising above it” strategy works, when the suffering increases.

My husband has stage iv glioblastoma multiforme. Right before his second craniotomy someone asked me how I felt about the news that his aggressive brain cancer had returned in a new location. I just ignored her. Another person said to me “you look good considering what’s going on”. I told her that me succomming to self pity and going downhill would not cure my husbands cancer, nor would it make him feel any better.

Don’t tell me to take care of myself.
Don’t tell me you’re sorry.
Don’t tell me you hate cancer.
Don’t tell us that we should go on vacation and do what we want to.
Don’t assume that you have some kind of insight into his dying.

Do mean it when you say is there anything I can do to help.
Don’t accept my first refusal of your help.
Come and mow the lawn, wash the windows, sweep under the couch, vacuume out my car, bring over a stack of movies, show up with a box of fruit, send funny cards, get my dog groomed, weed the garden.

Don’t stay too long unless we ask you too. Entertaining people is exhausting.

I really needed this today — thank you!! Super insensitive co-worker commented on how fat my cheeks were getting!! YAY! It’s because I’m on ANOTHER round of steroids for ongoing brain swelling from my brain tumor last year.
Total insensitive cow.
And sometimes we don’t have to be the understanding ones.
I high-five you the secret cancer handshake!!
😀

Wow! I am about to submit my PhD thesis: Information Needs of Children whose Parent has Cancer. I wish I could have done better as I find the anecdotal experiences here worthy of braining the brainless and clueless.

When someone said something stupid like these to me, I would smile and tell them they were low on my “people left to kill list” so I probably wouldn’t have time to get to them. I survived my bladder cancer after going through hell. Some of those people are still nervous.

One of the ladies had posted this when she was struggling to decide whether to have her other breast removed for her own peace of mind. Her breast care nurse said to her “you wouldn’t cut off your thumb for a splinter would you?” To which she replied “I would if it were toxic and trying to kill me”.

For a professional in this field I would have thought the breast care nurse would have been much more empathetic and caring. I don’t understand how she could have said this to a patient with such a decision to make. I would be asking for another breast care nurse if I were this lady.

I had a man tell me, “Yeah, I had a cancer scare back in my 30s. Real scary.” He was trying to tell me that he understood…because he “almost” had a cancer once. Don’t ever do that.

I was at a church service when the pastor wanted to pray for women who had battled or are battling cancer. Only 2 ladies came up…so he said, “and if you’ve ever had a scare come and let us pray for you too.” Please understand there is a huge difference between maybe having cancer and actually having cancer.

I can’t count the number of alternative cures and diets I was exposed to. Water, vitamins, mental attitudes, etc. Come on! Stop that!

Some of the above offensive things were said to me and I didn’t feel at the time that they were offensive. Makes me think that since every person is different and everyones journey is unique it’s better to keep it simple. “I am so sorry. Is there anything I can do to help?” Leave it at that. Even if you have survived cancer you can’t necessarily relate to the current cancer patient.

The best thing that was ever said to me was as follows…
I was having my 1st round of chemo. I was lucky to only have 2 rounds. While the nurse was setting me up and giving me instructions and all, I noticed a lady walk in, sit down, and start her chemo like she was an old pro at it. She had no hair. Looked tired and weary. I thought to myself I need to say something to her. We locked eyes across the room a couple times and smiled. When I was done and was about to leave I still couldn’t think of anything to say. As I walked past her I looked at her to simply offer a smile. She was the one who spoke. She said, “Good luck”. I am weeping now remembering it. She was so brave and so encouraging to me. I’ve never seen her since. That was 4 years ago.

I’ve read through the comments and smiled considering both sides. I have survived ovarian cancer, I’ve lost two sisters 20 and 38 years old to cancer and another sister was just diagnosed last month with breast cancer. We have bad luck. (genetic testing=negative), oh, and I am a nurse. Whew.

Yes, people say really stupid things, but the only ones I put in their place are the ones who mention God or pre-cancer “stress”. For better or for worse, God has nothing to do with cancer and God needs to be off the table with me. The others that say stupid things not involving God or stress, I know are trying to say something to give me comfort and are probably kicking themselves all the way home because they said something stupid. Besides, “Hey, at least you got great boobs out of this ” to one survivor might be funny if said by a close friend or sister over a glass(s) of wine, but to someone you don’t know intimately? No, it’s wrong–wrong like a stranger rubbing a pregnant women’s belly is wrong.

People with cancer are as diverse a group as people without cancer and trying to figure out what to say or do is a complex and land-mind ridden task.

For instance….One of my sisters was part of a support group to a neighbor with breast cancer, and they all took turns fixing dinners for her over the months she had chemo . My sister only knew her neighbor in passing, but was happy to take her turn delivering a nice, fun dinner when her name was on the schedule. As soon as this sister got breast cancer however, the first words spit out of her mouth were “no one better set up one of those stupid ‘take her dinner’ things, or I’ll kill the organizer'” How would you like to be the bearer of that message to the neighborhood? Yes, it is a land-mind ridden space ; )

So, if everyone just stopped mentioning God (except to those you are in church with if you are a church-goer), and took “Kate R’s” suggestion above, which is the best advice ever given: When in doubt say “It’s so GOOD to see you” and then just talk about the stuff you always talked about–kids, politics, schools, weather, sports and friendship.

And, for the most part, unless it is REALLY egregious like “it’s a gift”, just forgive the stupid comment. We are usually already kicking ourselves all the way home : )

My dad died of lymphoma when I was 7, I am 18 now. My dad did not have any savings, but had life insurance which resulted in me receiving a very large amount of money. This life insurance has paid for me being an exchange student, my first car, all of my college tuition, and other things. I realize I am extremely fortunate to have this, as many parents die and did not have life insurance, but I would trade my father for any material items I received with this money. I was giving a (now ex) friend a ride home in my car the summer I got it, and (this was a new friend at the time who didn’t know my circumstances) my friend asked how I paid for the car, so my story came up. She went on about how I was so lucky and she wished she had life insurance money to buy her things so she wouldn’t have to worry about money. I was SO MAD! It pissed me off so much that she was essentially telling me I was lucky to have a dead parent because I got money from it. Yes, I am fortunate to have many financial aspects covered, but that is not worth losing a parent. That’s like telling a current cancer patient that they are lucky to have cancer because they get gifts for being sick. Even if someone receives some benefit due to a negative circumstance, that does not mean that the negative circumstance is desirable. A simple “sorry” is usually always a good answer.

I have stage 3 colon cancer and the one clear and unqualified benefit is that I now feel able to talk to other cancer sufferers. Before I was tied in knots of embarrassment and my obviously not wanting to talk about it was probably as inappropriate as some of the things I could have said.

Since my diagnosis one of my dearest and closest friends has been diagnosed with stage 4 lung cancer with mets to brain. I have had to bite my tongue when she was saying words to the effect that we were in the same boat to prevent myself saying that she is on death row while I probably have a full pardon coming my way; and on another occasion when she said that she didn’t want her friends to see her in her current physical state I nearly but not quite said that if people chose friends purely on the basis of their looks she would not have one tenth the number of friends she has. Both kindly intended, but thank God I didn’t say either.

My sister in law has lung cancer and also seems to have a small tumor on the spinal cord which is causing some paralysis and pain. Everything came to a head within a week. My wife is devastated for her sister.

What came to my mind wasn’t that she smoked relentlessly since she was 16 (now 57) and at every family gathering I asked her to quit, because we all wanted to have her around cause we loved her.

What I think about are all the missed opportunities to tell her how much I love her, the sometimes cross words exchanged between she and her siblings. We all have been there.
Remembering times we could have picked up the phone and called her, but didn’t.

Death is a harsh reminder of our selfishness. I have no idea what to say when I see her, God willing. The only thing I really want to do is put my arms around her, tell her how much I love her.

Upon learning that I was undergoing radiation for cancer, a fellow commented “So you are choosing to live with cancer rather than die from it?” Really??? He seemed to think that he was being encouraging and supportive! I had JUST explained to him that I am fortunate as the cancer that I have is quite treatable. After his insensitivity I was so tempted to comment that I notice that he is living with his stupidity rather than deal with his rudeness!

My son has a grade IV brain tumor that came from a radiation treatment for his Leukemia he had when he was 6, my son is now 16 and if that wasn’t enough my mother was in the ICU for the last 3 weeks and I had people tell me “God only gives you what you can handle” I love that one.

Well last week I was at the hospital for my mother and one of the nurses saw my wrist band for my son which reads “TEAM MICHAEL” and “Miracle’s Start Here” and she said who is the band for, I replied my son he has a Glioblastoma Grade IV Brain Tumor and without missing a beat all 4 people, 2 nurses and 2 doctors both went in unison “awwwww with a very sad expression on their faces, I replied thanks for cheering me up and walked away.

Yes, some of these comments are unbelievably offensive and insensitive. But please understand that it can be VERY difficult sometimes to know exactly what to say to people in this situation if you haven’t been there yourself. I have personally avoided people who had cancer (or were related to people with cancer) because I was terrified that I would say the wrong thing!

31 years ago my son was born with cancer, I can’t tell you how many people asked me where my cancer was that he got it from me and how they were treating me for it. Well I thought I was over it until this morning, I was telling a co-worker the story about a girl on a reality show we both watched last summer had a baby and the sweet baby girl has cancer. His answer: wow I didn’t know she (the mother) had cancer how sad she gave it to the baby! My answer: I really want to slap you for being so stupid! Doesn’t anyone think first! The ‘God doesn’t give you more than you can handle’ is also just stupid. God doesn’t give babies cancer the way we treated our earth with chemicals did! And of course you handle it who else is going to handle things for you? Just saying

Hello to the person with the nasty tone, do you really want to know how to be a kinder and gentler person…start with your tone. You obviously dont follow this site or you would think twice about being so insensitive,especially this week. We got your back Lisa, not that you need it!

Thank you, Lisa and all of the people who have shared their stories here. They are so heartfelt and helpful. My father, a very vibrant, lively man who looks and acts far younger than his 72 years has just been diagnosed with Adenocarcinoma. I will be honest and I feel a little ashamed to admit that I am afraid in the presence of truly brave people like many of you here commenting, who have cancer; but it’s true, I am afraid for my dad and me. So many people keep telling me to be strong and brave, pray, take my dad to Mexico for treatment, feed him organic food etc. But most of them don’t know I have been here before and have a pretty reasonable expectation of potentially what is around the corner, and why it’s hard not to be afraid. Our family lived through losing my older brother to neuroblastoma. I know how to do this, I know what the affects of chemo and radiation are, what to expect physically, emotionally and mentally from a cancer patient and will be brave and strong when I am taking care of my dad; but I so appreciate a place to see brave and strong people like you sharing your stories and allowing myself the grace to feel the real human feelings.

Hey Lisa!
Well I know it’s very strange when going through something and the reactions of others. I’ve been expericing that for a year in a half now. My dad has a metastasis type terminal cancer with an unknown orgin. Well he’s been getting pretty off lately and I’ve realized one huge thing… “When stuff gets real, people change” aka friends/family. It’s the most disgusting thing to see. When people ask me to stop being “mopey” or “try to smile”. I’ve also heard “he’s going to be fine” wtf? He’s been in the hospital since August 1. So i TRY to comfort my dad and keep mind off the cancer. Because that’s not who he is. He’s a wonderful dad and person so I treat him that way. I just get real sick and tired of the people I haven’t heard from in a long time try ask me all these questions about him or just act like I’m overreacting. Which doesn’t a bit of sense to me. I’m 21 years old and I’m pretty young so this is a very tough situationt to be especially when my dad’s sign of the family says “Darcy needs to do all the work, that’s her dad” uhhh that’s your brother! See what I mean. Sorry I rambled. I need too! Kinda cool I was dealing with stuff like this and then I read your post!
🙂

A few months back I was diagnosed with appendix cancer after a routine appendectomy. It’s a rare cancer which usually is isolated to the appendix,but there still is a 1 in 5 chance of it spreading. When I was waiting for my CT scan appointment, and the results of the scans I wrote on my Facebook that there was a cancerous tumor found in my appendix. I started getting stupid private messages, and one was from a New Agey shrink. She said no wonder that I got cancer because of all of my “negativity” (I lost my dearly loved grandmother the year before to a misdiagnosed kidney tumor so I’ve not been in a good mood). Then there was this religious wacko that said that God gave me cancer because on the public part of the page I put that I attended the school that Harry Potter did.

My husband was recently diagnosed with metastatic melanoma. His sister proceeded to tell me about two people who had just died from it (who were in the paper) and that I REALLY need to get my children checked as it runs in the family (8 and 11 yr). Of course, I know this (and they have been). But please people – don’t harp on at an already stressed Mother that her children are now at a greater risk of developing Melanoma or whatever other cancer! PLEASE!

I am very ashamed to say that I was once one of those people who tried to put a “positive spin” on things, when a friend of mine’s husband was diagnosed with terminal cancer. I am far too ashamed to tell you what I actually said, but I honestly thought that I was doing the right thing at the time……. But, I then experienced a debilitating illness and realised (when people were saying things to me – bedbound at the time – like “Make the most of the time off work, you won’t get another chance like it!” and also “Why don’t you use this time off work to start a family?”) how utterly awful the thing I said to my friend was, about her husband. It really made me think about what I say to others and opened my eyes to the fact that people with cancer and their relatives/friends should be allowed to feel angry and upset and down when they are ill/scared and they shouldn’t have to pretend to be all positive, just because it makes others more comfortable. I have since apologised profusely to my friend……who accepted….and is still my friend……..but I’m not sure that I would have been as magnanamous as her, if the tables were turned……. I am learning from her how to say the right thing and how I can best support her. Anyway, sending much love to you all xx

I had stage 1 (C) Endometrial cancer, and a “friend ” said to me that SHE didn’t get sick as SHE thinks positively!!!! I tried to tell her that I and many other family members have the defective gene that causes several types of cancer, but she interrupted me, saying that positive thinking prevents illnesses.

She went on to say that certain people “chose” to be ill, and the book, As a Man Thinketh, Chapter three, backs up this claim that the cause of all illnesses is our thinking.

It’s bad enough to deal with the frightening diagnoses of cancer without some insensitive and negative person tell us that it is our own fault. She claims to be a “positive thinker”, but she is the most insensitive and negative person I have ever met.

I recently found out that I have ILC. I looked for advice on how to tell friends and family about how or what I need from them, hence, I found your list. However, one thing that I struggle with is my inner voice telling me that I do not need to tell anyone unless I want to or legally have to. (ironically, I am putting this on the internet, maybe I am a hypocrite :))

Your list has reinforced my need for protecting my privacy (as long as I am able to do so) because too many people are insensitive and turn idiotic if they find out you are ill. The web resources give lots of advice TO talk about it in order to cope but I think if I do, it will be very contained. But for today, I shall share my experience’s thus far.

EXP 1: Unfortunately, my best friend told other people after I specifically asked her to keep it in the vault. Now her over-reacting mother looks at me like I’ve crawled in from getting hit by a car.

I don’t understand how people can go from diagnosis to ‘you are dying, tomorrow!” in a second…seriously… I am now finding it difficult to speak to her right now and am unwilling to give her any updates. That’s another topic for another day.

With the few who I have told, I have received great positive responses.

EXP 2: I did get the proverbial ‘god only gives you what you can handle’ BS…maybe we should invent some ranking for a drinking game…just for the humor. Or better, yet, summon this “God” to give everyone stricken with illness the ample time off from work for years if needed, the energy, fierce or almost inhuman coping skills, and financial resources to pay for all of the ‘stuff’ that one can ‘handle.’

EXP 3: And my favorite guy friend offered to donate his man boobs to me (should I need them) which actually cheered me up and caused me to laugh hysterically. However, he only said that after he cried and I was consoling him…life is weird. Strangely, I know in my heart that if I needed them, he would sign up… Humor, however, is really helping and I look forward to his calls.

I do not see how this or any other form of cancer/sickness as a gift whatsoever, either. Human suffering is not a good thing and makes me very sad. It has not changed me from being an already compassionate and giving person who loves life. For luck, I will say, I look forward to seeing the so-called ‘gift’ component.

Perhaps, the lesson learned is that these insensitive remarks can help ID people that you need to be ‘wary’ about but not ‘worry’ about as you have to, HAVE TO, put yourself first. Your voice is the most important one to listen to anyway.

How about the friends who don’t say anything at all? As a caregiver for my mom for about 5 months now, I am astounded by the number of people who simply fell silent after I shared the news. Or ones that don’t come around or contact me because from what I hear, they are scared, uncomfortable, and afraid it’s going to happen to their parents. Newsflash: you can’t “catch” cancer by taking your head out of your a– and asking how a friend is doing.

I read once that having cancer gives you the opportunity to “weed your friend garden”. Its so true. People that you thought were friends turned out not to be and other people turned out to be a much closer friend than you knew before. When I was diagnosed with Stage 11B BC, I called a fellow psychologist to see if I could refer therapy clients to her as I was going on leave. She agreed and we met. She was all business: billing rates, insurance etc. Not once did she express any concern for my physical or mental health. I have never spoken to her since. This was someone that I had worked with for 30 years. I took perverse pleasure in the fact that none of my clients liked her and they all came back to me when I resumed my practice.

Other psychologists that I knew less well were amazingly supportive, sending me funny videos, books, offers to sit with me through chemo, etc.

Im sorry that there are people passive aggressive enough to say such a thing. I dont mind the stupid things people say when they come from caring but comments like these are not at all kind or well intentioned. I think that I would be direct with the person and have them explain themselves and then decide whether or not you want them in your life any longer. Life is different now and relationships need to be caring, loving and most of all stress free. I have been determined to eradicate poison relationships from my life now that my time may be limited. Life really is too short! I have trouble fitting in everything I want to do in a day due to post surgery,chemo,radiation fatigue…cant spend the energy on thoughtless people like the one you described. I wish you the best.

Thank you to Stage 3c , Portland Oregon and to everyone else for your kind, thoughtful supportive words. This really does help in knowing that there are kind, thoughtful people around. This “friend” who informed me that SHE doesn’t get sick as SHE “thinks positively”,(obviously she means unlike me, what a joke). She also told me that eating a disgusting waste matter “cures cancer’. She said she read in an article, that a prestigious researcher “discovered” that eating that “cures cancer”. I was disgusted. I told her that eating that would cause sickness, possible renal failure and possibly even death. But she went on to disagree!! I asked to see this “article”. She didn’t have it. I asked for the name of the “prestigious researcher”. She couldn’t remember. To be objective and fair, I suggested that in that case , she was really seriously, seriously mistaken. But no, she insisted that this was correct!!! Some “friend”. I cannot have someone like that in my life as a friend or even an acquaintance. She does not have cancer, but she certainly does have a serious problem. I wish all the best to everyone here.

I would be so tempted to ask such a person if they would be willing to eat fill-in-the-blank themselves. She sounds like one of those people who tells abused children that they “chose” their parents. Elsewhere I reacted to this, “G-d gave you this illness as a gift” stuff. May I suggest that the next patient who has to hear this respond with, “I’ll be praying that G-d gives you the very same gift. Would you like that?”

Wow! Just thanks for spreading such love, joy, and ‘realness’ along your journey Lisa! This blog came into my life yesterday – when I was once again struggling with…stuff.
My beautiful son, now 30 – was dx’d with inoperable brain stem glioma – huge tumor – SEVEN years back?! Prognosis for that type of cancer – was/is maybe 6-15 months…and he’s had seven years. He had just become a father a few months before diagnosis – and since he was in the military – thankfully had access to some of the best medical care possible. A difficult round of full-brain radiation for 8 weeks, brought a remission in the following months, or a quieting of Godzilla as we referred to it – and…though many changes happened in his body and life – he’s had all this….lovely TIME! Since we had lived on opposite sides of the country, and because I was able to move – I decided a few years ago to relocate closer to him and his young family. Not right next door…but a few hours away. Almost to the day, 7 years later – the cancer roared back and with only one option left, he began a rather difficult chemo regimen. It is to stop…progression. It will not cure. It’s as good as it gets. It is a time-buyer. And time…we are thankful for. We are close. My lovely dil and granddaughter are the most incredible people as well. I see this through so many layers – and it is past heartbreaking on good days – and almost unbearable on the bad ones. And I do not hand-wring in front of them. I absorb…I listen…I’m a target for misplaced rage against…life. That in itself is very hard…but I can do this for them. But…we have all this delicious time! Each day is wonderful – even for small things – So, with my mother-heart and somehow knowing without words – once again connected with his…and asked what I could do for him…right then. “Well, he says – my damn left eye is all wonky again and looking horrible Mom. Can’t do much about the hair (it exited back during radiation and he’s rocked that smooth look since) but man this eye is bad.” I said, got it. As we speak – I’m designing the most awesome leather pirate patch for you and it will be on the way soon! He laughed and said he loved me – And I laughed and took a deep breath and later cried.
So – my son and I have chosen to find joy in little things, and sexy pirate patches, and we dare to laugh, and to sit in silence, and to just….be. My daughterNlaw and I talk about being book-ends. “I’ll remind him of stories, things forgotten…from…the before” I say….and you can right post-it notes and remind him on things-to-do tomorrow!” and in the middle – the today part…we can just let it happen.
We…live. Sometimes, probably most of the time – to someone else – we simply aren’t doing it right.

I have been told….”OMG, HOW could you JOKE about something? Have you no dignity?”
“How can you plan this or that? What if he’s not here by that time…can you get your money back?” Someone who heard they were planning a trip in January.

I have been asked “I thought he was cured before with radiation. Did they do it wrong? Can you sue somebody?”
“don’t worry, at least you have another son.”
“do you think your daughter n law will remarry?”
“do you think it’s because you divorced his father 17 years ago that the stress caused this? Divorce isn’t good for families.”
“When will you KNOW if the chemo is going to work and when will he die?” seriously asked of me by someone that saw me crying after the phone call.
“does your son know that the reason he has cancer is from his original parents, from the Garden of Eden? who disobeyed God?” I’m…not religious. My son is agnostic.
“I just don’t KNOW how I can get THROUGH this.” cried my mother to anyone that would listen. She…only wanted attention for HER…and it was HER story to tell. She told a total stranger, who told another person that knew my sister, who arrived after dark on my sister’s front porch to inform her that HER nephew was dying of cancer. I’d not been able to get through by telephone to my sister and this hit her on a dark night, thinking that he had died right then.
And my favorite came yesterday – when someone had told me that I needed to forget about my son’s cancer and to move on since it was nearly over.
and another one from a well-meaning friend that of course … knew…of a better doctor, a better hospital, a more up-to-the moment SURGICAL procedure ( it’s INoperable, remember?) a new diet, etc…won’t list all these ideas …..

And the person that asked if I could tell a ‘difference’ in that she’d been ‘praying’ for me and just ‘knew’ our burden had been lifted!

The landscape of being a mother changes when you hear those words about your child having cancer. It DOES NOT MATTER if that child is an infant, a child in jr. high, or…a grown up child. Some people think that it should somehow be easier the older they are – and even some seem to feel it should be any big deal if, after all, that child is an adult. Am I NO LESS a mother??

And I was once asked what I would DO…after my son was gone. What does this mean? What will I DO?

Why…I think I shall make pirate patches for wonky eyes and remember all the delicious moments we got to share…

And try very hard to forgive the people that simply didn’t know how to say…”Fuck…I’m sorry…wanna go get drunk?” as a previous poster from above so beautifully shared!

Thanks Joanna! We could…start a group! People who love people who have wonky eyes or other assorted body parts, and we could all wear pirate patches and drink toasts l’chaim! We wouldn’t have to talk like a pirate…only look like one.
How dare we…laugh, right??!
We should dance too…
Love back to ya…

Perspective changes any one thing from one person to the next. As I read these comments made by others, I’m only hearing communication between two individuals. I kept thinking that maybe the next one will shock me, but it never happened. I’m hearing sympathy, consolation, constructive advice, and realism. I read a quote once stating that life is all about relationships, maybe that’s true. My perspective is coming from a different point of view than your’s is, and those comments you posted come from many other perspectives; That is a fact.

I am one of those people who said something stupid to my dear friend with stage for breast cancer. I said some dumb things at the beginning, then after reading blogs like this I began to say the right things this whole year. But last night I said something that caused her huge grief and anguish.. I didnt mean to, and i am so angry with myself and sad. Now i am afraid to ever talk to her again. I told her i was sorry, but i can’t take it back now. I wish i could rewind. Should i remove myself from her life? Or maybe just send flowers and not actually talk to her? I don’t ever want to say the wrong thing again, but i am afraid i might….

I always think an apology should be honored. If you realize something you said was wrong, and told her, I think she should forgive you. Or I would hope that she would.

Pointing out things that are “worse” and “better” to say only goes toward education, toward trying to bring people together. Maybe writing a note and reiterating your apology would be helpful, but I think that’s all you can do. Hopefully she will feel the same. I’m sorry this happened to you both.

Elizabeth – I think what Lisa just suggested – a heartfelt note and apology is a lovely idea.
And then….let it go. It’s easy to cross a line in continuing to seek forgiveness for something you feel you said – where then, the energy is spent by your friend in comforting…you. You don’t want that to happen. Do not pull back from your friend – but don’t keep this issue on the front burner. She just doesn’t have the energy, nor should she find it at this time – to make it all ok for you. Just continue to give her love, and forgive yourself!

“Trucking right along”. My wife was first diagnosed with breast cancer in 2002 and stage IV breast cancer since 2009. A few weeks ago we went to radiology/oncology to discuss treatment options for a tumor (with other possible tumors) in her brain. The first doctor explained the treatment options and showed us the location of the definite/well formed tumor and the areas that were not defined enough to be labeled cancer. The chief of radiology/oncology came in later to help us with our decision by giving us more information. As he was “selling” the targeted radiation, he said the undefined areas may or may not be cancer. Here is the kicker — he said that since my wife “had been trucking right along” he thinks the treatment would be fine. After she put him in his place, he then tried explaining his credentials and who he studied under. Who cares?! There is a saying that author John Maxwell often quotes about leadership, “they don’t care how much you know until they know how much you care”. Many people, including (or maybe especially) healthcare providers, could benefit from that statement.

Here are a few that have been said to me.
Every body dies. I prayed for you but God didn’t answer my prayers. I never go to drs because I dont want myself or my family to have the financial burden or emotional strrss….I would let nature take its course ( my mother in law ) my6 husband wished it were him instead of me because the world would be better off without him. I f it were him instead of me he wouldn’t seek treatment but would continue to work as long as he could then die.

Anonymous Oct 28,
I am so sorry that people have said those insensitive,hurtful things to you. Just to let you know, that there are some caring people out there, such as most of the people in this group, and who wish you all the best. Hugs to you, Lauren

I had a Mamo-ultra sound-2 needle biopsy of breast-2 of nodes-MRI -PET Scan in a 10 day span—was in the Breast surgeons office for reading of MRI/PET–thought I was there to discuss surgery and ?—–The receptionist told me that I did not need to make my Co-pay for that visit, CAUSE they didn’t like to charge when the news was bad, I was put in a room and left for 65 mins. till the Dr. came in. It had not accured to me that I was moved to the last , late day appt for a reason.——-Presented at Stage 4 Breast Cancer with HER2 gene.
Nothing will ever compare to what that woman did to me.

January 11, 2010, ultrasound waiting room, I get my bloody head ripped off by the secretary, telling me that they DON’T do PELVIC exams in the MORNING and that’s gonna screw HER ENTIRE schedule for the day.

Later that day, I learned I had squamous cell carcinoma of the cervix, 1B2 tumor, Uber-aggressive, para-aortic lymph node involvement and was going to have 35 enlarged external field radiations, 4 internal brachytherapy sessions, 7 cycles of Cisplatin and 4 cycles of Cisplatin/Gemzar combo. THAT screwed MY day, kinda.

Following complications, (Stroke because of chemo) I was seen by a palliative pain specialist who told me his wife died of the same cancer I had at the same age I was (39) and he even shed a few tears. Thanks… Now gimme my damn morphine and go **** yourself. That doctor was eventually “dismissed” for giving me wrong meds for nausea. Meds that made my heart stop during my third brachytherapy session. Guess he was still grieving so much he forgot to look in my file where it clearly stated I had low blood pressure and that those meds had that too as a side effect…So when the Versed and Ketamine hit my port, well… anyways… at least, the reanimation chariot was close by.

To this day, I’m still asked by many doctors if I’m kidding when I tell them I’m in my menopause because I still have my ovaries. They don’t believe me when I tell them that radiation made me sterile. They say I am INTACT. (One of my oncologist (with my blessings), refers to my vagina as Freddy Krueger’s face. You call this Intact?!)

My mother thinks she can cure me with plaster statues and Dollarstore plastic votive lights. Yay. At least she found religion. Doesn’t do the church thing, but hey! Halves her electric bill, so why not.

Doctors are now strongly suspecting a non-local recurrence. Can’t wait for the stupidness to resume.

Thank you for this blog. The only thing keeping me alive (and sane and out of jail!!!) is a morbid sense of humor and a wonderful, supportive and morbidly funny spouse! And, of course, people like me, like you guys, which I like to refer to as TCDS or: Treatment and Collateral Damage Survivors, which includes not only cancer survivors, but family and helpers as well who have also been there, done that and have gone through their own kind of cancer hell.

I do not have cancer I found out the one of my friends does I what to make sure I was not been route or insensitive next time I talk to her. I have read all the post and I realize how route and mean some of them are, thank you one again for opening my eyes

I was diagnosed with stage 3 breast cancer and was surrounded be incredibly caring and supportive family and friends. My husband was there for my pity parties, fears and well more fear. He regularly kiss my bald head and told me he loved me. When his mother told me about her hairdresser, I found it insulting to listen to this other woman’s journey. Even though it was one of survival and hope, I was just not interested. She was not unkind, or even insensitive. It was me, just me. My point is, the fact that people care enough to try should give us encouragement. If we find there approach offensive, well we’ve got the right to remove ourselves. However, to be hurtful back is intentional. I don’t want to be that person or to allow cancer to make me feel that it is okay to inflect pain and embarrassment with some flip response. We all respond to our walk differently. When I told my father, he laughingly joked that it was a small loss, I have always been small breasted. It made me laugh and agree. His comment might have been incredibly rude for someone else, but for me, it was just what I needed. There was one thing that I did ask, please don’t look at me with sad eyes. See me, not my cancer. I am now 5 years cancer free. Chemo, radiation and surgery saved my body. My family and friends helped me to remain me.

I hate when people say “oh you don’t look sick…or you don’t act or sound sick” those two comments not only hurt my feelings but get under my skin. Whenever someone says that to me or about me I always hear it as a translation of “I would much whether you look like a walking skeleton or talk as if you can not talk at all”. Sometimes I feel like people don’t understand how it feels to be 23 years old in the middle of graduate school living with brain cancer. To no longer be able to be fully independent, you can’t drive anymore, whenever you go into a coma…family act as if it’s the end. Friends lie to you and say “oh I’ll be here for you..whatever you need I’ll do it” when in reality they won’t… they don’t.. and they never will. Having cancer shows you who your real friends are..it shows just how flawed we are as human beings. How if their not going through it themselves you can never fully be upset with them for not understanding. Some people never take time to learn how to not deal with us but simply treat us like we are normal. For the most part we are as normal as we can be on certain days, I hate feeling punished for feeling good and having a great day. But when my day is miserable and I’m having a down sick day it’s approved..or people get closer to me. Sometimes I feel alone..I’ve already embraced the fact that I’m dying. I hate when I feel that I’ll never get the smallest things I want or need before I go.. when I want to vent everybody seems to disappear..

Thank you for this! I have heard many of these types of insensitive comments from people after I was diagnosed with breast cancer last year. I found it exhausting telling people and then having to make them feel better about it because it was hard for THEM. I am the one going through it while trying to deal with my three kids, etc. Some of my favorite comments I got were…
-” you will be fine-RELAX- it will just be a little blip on the screen of your life”
– “but you are so healthy!” (implication is what did I do to bring this on)
– “I am most concerned about how stressful this is for your husband. How is he going to cope?”
-my MIL telling my kids they have to be good and not be upset because I am sick. Nope, they are kids and they are allowed to be upset or sad or have a rough day
-rant from FIL about the evil drug companies and how we can’t trust them or the drugs they produce…the week before I was starting my chemo treatment. Not helpful.
-“you will never be the same” from my SIL, repeatly
-personal favorite that a “friend” said to me- “at least your hard time will end” when comparing her contentious divorce to my cancer diagnosis. End with what? Me dying. Thank you!

My father has stage 4 pancreatic cancer. I get so sick of everyone saying “Stay strong,” and “Only positive thoughts.” I find that so invalidating. So he’s not allowed to feel depressed, afraid, angry, etc?

I even had a coworker say to me “It’s up to him if he wants to beat this.” Makes it look like his own fault if he doesn’t.

Hi Molly,
Yes, I found a lot of the same insensitive,hurtful comments when I was diagnosed with Endometrial /Uterine cancer. One friend merrily told me that SHE never gets sick, as SHE always thinks positively! I was shocked and sickened by those, and other, insensitive, negative comments. In other words, she was implying that it was my OWN fault that I got cancer, as I apparently did not “think positively”!!!

Oh, the myth of positive thinking!!! No, it does not cure cancer. Unfortunately. If only it were that simple!!!.

A lot of this “New Age” thinking is very negative and very insensitive and hurtful to those who become sick. I see that a lot of those New Age guru thinkers make a lot of money selling courses, seminars and books.

It’s bad enough to be diagnosed with cancer or to have a loved one diagnosed with cancer, without having those friends and co-workers tell us it’s because we did not think positively!!!They have some nerve.
All the best to you and your father, Molly.
Sincerely, Lauren

well I’ve got a good one that I don’t know how to deal with. My mother went through stage 3 breast cancer and had been clear for at least 8 years. I now am fight stage 3 lymphoma. every time I am around her , all she talks about is this person or that person that died from it. If anyone should know that’s not what you want to hear , I would think it would be someone who has been through it. I’m in the hospital now because the chemo wiped my white blood count…. she keeps saying they did something wrong because hers didn’t do it to her. Help open to ideas.

Ah, this is a common scenario. I’ve even had this situation with people who didn’t even have cancer themselves but it was their child who had it. Also people who had treatment or were diagnosed years ago when protocols weren’t even the same and neither were outcomes or the drugs used to treat or control side effects

For this one I found that it was necessary to directly say, “you know, science has changed so much that even types of the same cancer can’t be compared, much less different types of cancer. Just because it happened one way to you or to people you know doesn’t mean it will be that way for me. I know you’re trying to be helpful or maybe comforting, but the best way to do that is not to tell me what happened to other people, especially when they died. Imagine if I kept generalizing and telling you ‘horror stories’ about people with your cancer. Instead, please support me and my individual case. I am well aware of the seriousness of the situation. If you can focus on me and listening to/ supporting my decisions right now that will be really helpful. Thanks.”

I will keep you close in my prayers. Other cancer survivors are the toughest I have found. Relatives even tougher. My suggestion would be to first focus on what you need to do to complete your treatments and become well once again. I would gently tell your Mom that you need support in this fight and you need her to be one of the supporters. Ask her to concentrate on what is going right with your treatment and be positive.

My SIL and my cousin’s dear wife (both 59) are struggling with different types of cancer. I have stupidly said many of the things above in a sincere effort to try and express my “understanding” of their diseases by telling them stories of others I knew who were struggling, by saying I was praying for them, by encouraging them with “I am thinking of you” texts, sending gifts, CDs and an iPad to pass the long hours during chemo. I have tried to do and say what I would want done or said to me…..or at least what I THINK I would want. – but truthfully, I do NOT know how they feel.

I found myself trying to assess how my communications would be received and feeling totally inadequate. Sometimes I could make them laugh, sometimes I made them angry. I felt like I was stepping through a mine field and backed away for fear of saying the wrong thing.

Certainly distancing yourself from continued stupid comments makes sense, but if someone is trying to console- acknowledge that and if you can, tell them HOW to console.

If you are the one trying to console- ASK what you can do and then LISTEN.
Not everyone responds in the same way. One person wants to talk about their treatments over and over, while another wants to pretend it is just a minor annoyance and talk about her regular daily life and not be reminded of her illness.

Both ladies have told me that they do NOT want:

To talk about death and dying (who would??)

Be told that they should try any other treatment than what their doctors have prescribed (they know what else is out there and have already made that decision, thank you!)

To have food pushed on them (they don’t want to eat to make YOU feel better when they might be nauseous)

For me to have a sad, worried face (My fear makes them angry, fearful and/or sad)

What they seem to appreciate the most:

Me being my normal self around them
Hearing about what is going on in my life
Me listening when they need to talk
Me asking about their work, their siblings, their lives before I knew them, etc.
Me texting a hello- I am thinking of you
A joke, a funny picture or video, a comforting book

I honestly don’t think most people purposely say cruel things. They may say stupid, clumsy things out of ignorance. Try and educate those people. It would be a kindness.

For the rest of the ignorant, rude remarks, Ann Landers used to say that sometimes just staring at them in silence is “comment” enough.

God this brought back memories. I used to get so angry at people’s insensitivity. My 20 month old daughter had been diagnosed with bilateral wilms tumour (kidney cancer) she was knocking on heavens door more than once but thankfully after enduring 10 months of aggressive chemo and losing her left kidney and part of right she thankfully made a full recovery and has now been in remission for 18 years 🙂 but during this awful time i heard “oh I know how you feel my house was broken into last month”?? Yeah coz that’s the same!! On taking her to a funfair on a rare break from hospital I asked if I could take her down one of the slides on my knee. (She had a nasal gastric tube in) I was told “if it was a normal child I’d let u but not with her” on telling someone that the following week i had to take my baby back in for second operation to remove tumours from her remaining kidney the said person told me ” aw but that’s nothing” another time “did her hair just never come in or is she ill?” “So what have u been doing with yourself” this was from a relative who knew exactly what I’d been doing 24/7. Sorry for rambling on but I’ll never forget how hurt I was by some of these comments. My mum nd I used to say that if pple don’t know what to say just say I’m sorry to hear your child/you are ill and ask how they are. That’s it! Best wishes to anyone still suffering or whos family member is fughting this horrible illness xx

Sorry I forgot to say the worst one. The saying I detest! “Just think there’s always someone worse off than yourself” when my child was lying vomiting constantly with tubes coming out of everywhere. Not knowing if she’d survive it really really didn’t help me to think aw well there’s someone going through worse than this just now.

Colon cancer stage IV – I learned my diagnosis from one doctor then went to my primary care doctor for the next steps. He looked at my test results and said “it’s bad”. No kidding. Then he proceeded to scold and lecture me on the importance of colonoscopies. I guess he thought dying wasn’t punishment enough.

A long time friend, wrote me a note telling me that I should start letting my girls know that if daddy remarries after I die that that is okay and that they should open their hearts to this new woman. My daughters are ages 12 and 15, and they do not know even know that I have cancer. (I have an incurable form of brain cancer).

I got diagnosed with breast cancer after biopsy. A friend told me she went through this and she didn’t fear any more for breast cancer and it is nothing for her her brest being cut off. So I thought she went through several years difficult time. Then I learned she got one mammography and then biopsy which turned out NOT CANCER.
OMG.

I am happy to report I have been cancer free for two years. I do have to say that the vast majority of those I knew were wonderful to me. I found that people were caring, kind and considerate in ways that brought me to tears. My spouse was a rock and never left my side.

However there were a very few horrible things said to me. At the first party I attended after completing chemotherapy ( no hair on my head) someone I did not know actually asked me if my pubic hair also fell out. She just always wanted to know! I answered her truthfully, honestly I just wanted her to NEVER ask another person going through chemotherapy what she had just asked me. I let her know her comments were rude and unfeeling. Amazing what people can do to one another!

Honestly, I do believe there a far more caring and wonderful people in the world and I was fortunate to be surrounded by these. If someone is insensitive, let them know and save the next person from having to deal with them!

Agreed with all of the above comments of what not to say…have heard many of them. One that really gets me is how I should be grateful that people go out of their way to comment about my life. All the time. That i should be grateful for people’s sympathy, pity and social ostracizing, because “they care so much”….I am spending the holidays alone, like I do every year, because people are so inclusive and welcoming NOT

I empathize, Ruth. My mother, so caught up in the fact HER DAUGHTER is sick, cannot be bothered, and expects me, the said daughter, to take the bus for 2 hours to come visit for the holidays. She’s too distraught.

I am still having physical problems after my BC treatment. I had surgery/rads/hormone therapy, and still have issues today resulting from the treatment.
A close friend suggested that there was no way my current troubles could be as a result of the BC, since they have another friend with BC that was ‘much worse’ and she had had chemo and now is back to running and working out and doing just great.

A few days ago a good business friend of 61 years old, called ma with bad news and shocking to us all. He knew he had a prostate 15 times its normal size but always felt fine and decided to check it out again. This time the scan showed it had spread to his right leg, shoulder, pelvis and spine and is moving fast. The doc said he 5 years at the most if he got on treatment, of which he will start soon.
—
The comments above I would never use. First off if I were him, I would keep my illness to myself and tell only a selected few if anyone at all. But when he told me I said, Oh I’m sorry to hear that Tom, it makes me sad to know but now its time to play the game called “Beat The Odds”..People do it all the time. Thats all I said and let it go at that. If he wants to talk about it well that’s ok. But basically I said, well Tom we just take each day 1 at a time and see how things go., and look for the best.

I just had a woman tell me how lucky for my family that I was diagnosed stage IV as a starting point—that way my family was not going to have too long of an drawn out illness!
I think I’m going to start a savings acct. and put a dollar in for every bad comment and next time someone is on her level, I can use the money for bail

Hmm, well i doubt this will go down well, but I found this page on the net by searching “sick of hearing about breast cancer all the time”
But I’m glad that I did..
Like so many people I’ve been led to believe that breast cancer isn’t that big of a problem anymore, same with childhood lukemia and aids etc…
In fact I’ve been pissed off because I have a grade 4 gbm brain tumour the size of my fist, that crosses from my right frontal lobe into my left and runs very deep. Treatable but not curable..
Wow I wish I could go back in time and not have the radiation/chemo therapy and just have had the craniotomy.
Brain surgery was actually a bit of a doddle to recover from over just a couple of weeks. Radiation stopped several months ago and I still haven’t bounced back from that. Plus the fricken dex, evil stuff that dex..
Not that big a fan of endone either.

As I attended the cancer and blood clinics and the oncology wards etc it was amazing to me how many women were always present compared to men..

Also how loud they all were as they “fought the good fight” – it was also weird to me that just about all the women present had at least 1 or more female friends attending with them for support.. Soooo loud..!!!

Men just don’t tend to support each other to that sort of degree and are a little lower key about “stuff”..
Most of us males are fine with that I think.

Anyway, as a “cancer whatever” I can relate to many of the comments etc that you guys have written about.

My worst both came from my x wife who runs a health food store and is a rekie practitioner.. She told me that this was going to be a great learning experience for me

I see what you mean about support groups. I think for some women going through breast cancer, it helps to have female friends there, especially if the treatment would affect her breasts (mastectomy, for example), as for so many women one of the things they can be proud of is their breasts, and to lose them must be devastating, and sometimes a ‘girls’ group’ can help. I think girls are more prone to that the men!
I must point out though that in the time space of about 3 months (in Sept. of last year to Nov. of last year), not only did a 17-year-old girl at my school died after lung graft infection following a double lung transplant made necessary by a recurrence of childhood leukaemia, but my 59-year-old aunt died of a recurrence of breast cancer. Both a long, long way off from being ‘not a big deal’.
By the way…I maintain prednis. sucks the most for all people involved!

8 year breast cancer survivor here (dx at 35) and while I heard some doozys, most people were pretty considerate. The one item on this list I disagree with (in part) is the Lance Armstrong comment.

It would be ridiculous to tell someone that so-and-so beat cancer so you can too. It is equally ridiculous to suggest that a positive attitude can beat cancer. But… giving someone something positive to think about is awesome. I think when people are terrified about odds, to be reminded that he had a 1% chance of living gives encouragement that someone has to be the 1%.

As a cancer survivor I’ve had many of these things said to me as well. But I would rather have someone attempt to console then walk away. Which many do. Many of the things said above aren’t offensive or even callous. People don’t know what to say and they are trying to help you stay positive. Being negative and thinking your going to die isn’t going to help you with the battle that lies ahead. And if someone says something that is thoughtless then it is our job to educate them on what cancer really is about. Explain your new normal, the length of treatment, your fears. Some may never get it. You can’t relate in many instances unless you’ve been there. But that’s ok.

I’m kinda bummed I stumbled upon this blog. Way to much negativity. I’m a survivor not a victim. I didn’t waste my time being angry or feeling sorry for myself and I am still dealing with the fall out from all my treatment. But sitting around complaining about it or complaining about others isn’t going to change anything. And what if you don’t beat it, do you want to spend your last days on earth complaining, being negative and being a victim? I know I didn’t.

How does being angry change your diagnosis or outcome. It’s just wastes valuable time. My cancer treatment wasn’t all bunnies and roses. I lost both my breasts, 8 rounds of chemo, 25 rounds of radiation, 10 years tamoxifen, 4 surgeries, multiple colon infections, post chemo arthritis and now adrenal gland fried. I worked almost through the entire treatment and when I went on leave to recover I lost my job. Was unemployed a year and a half. But I dont and didn’t sit around feeling sorry for myself or being angry or get mad or vent about people that said things like you’ll get through this or I know someone that survived, or everything happens for a reason. These people are trying to be supportive and it isn’t their fault or problem your being a martyr and feeling sorry for yourself. I have surrounded myself with tons of cancer survivors not cancer victims. Yes people do sometimes think they are saying the right thing and they aren’t but to say how ignorant they are or cruel or stupid isn’t being any better than them. I personally think its worse. Because they can’t understand unless they experience it. I am strong and a survivor and I overcame this obstacle with grace and humor. I am a better person because of my journey. I think it’s sad you are so angry and wasting precious time. As we all know life is short. Go enjoy time with friends and family, take in the beauty around you instead of posting angry negative comments about how much people suck and poor me.

How dare you pretend to judge what’s going on in someone’s entire life by one comment?

I was so positive during my first treatment, my oncologist sent me to see a shrink because he said I was in denial!

You actually think everyone here spends their entire days bitching and being angry? Hello! Welcome to the real world!
Have you read the actual title of this blog? This is a place to vent on the actual things people said to us that were STUPID and that made us angry!

You made a mistake coming here. Sorry we don’t need your all encompassing positive wisdom, and sorry you don’t get that different people react and need different things. Take the time to read the posts here, we’ve basically all heard the positive attitude sermon crap and are tired of it. You really think you’ve contributed something we’ve never heard before?

And sorry, but this is the last post I’m wasting on you. I’ve got more positive things to do.

Why not judge you by your several posts, you judged me and said my cancer was bunnies and roses. You were postive through your first treatment, oooh good for you, Ive been positive through it all 4 surgeries and 32 treatments. Your an angry sad person that has been victimized by her cancer. Get over yourself. I’m so glad I don’t surround myself with people like all of you. I have read the blog and comments and I think they are sad. Yes cancer sucks and I have lost many a loved one to the horrible disease but I had cancer, cancer didnt have me. We all have bad days with this but some of us choose to be greatful for what we do have and not what we don’t. But you go be your “positive” self with better things to do. Like smoking. That’s a real positive thing to be doing. When people are just angry they can’t see it and they want to find others to marinade with. Misery loves company. I choose to be around strong women not weak ones.

Cindy who do you think you are?telling people how they should feel. You came on here to let us all know how amazing you are for being so positive when we are all just moaners. Well that’s great for you but being a positive person is not the thing I’d most want to be remembered for. I’d much rather be known as kind and caring. I respect how others feel and know everyone has the right to deal with things in their own way.That comment about smoking was totally uncalled for. Now please go find a blog for wonderful “positive” (but bitchy) people. You’ll be a Lot happier there.

This is a post on which people can vent.
People deal with things in different ways, and I’m genuinely glad that you found you could be positive all the way through.
But you know what? For some people, the tests are annoying, the waiting is nerve-wracking at best, and from my experience of family and friends with cancer, treatment and surgery are both pretty awful. Calling people ‘weak’ when they are scared, angry or upset is like telling a girl who has had a miscarriage and telling her that she is ‘weak’ because she is upset. You have no idea about any of these people. You don’t know how strong or weak they are and you are in no position to judge.
People react so polar to each other in situations. My auntie was diagnosed with metastatic end-stage breast cancer last July. I remember the day I got the news. My dad (my aunt was his sister) seemed calm about it, although she would be the 2nd of his sisters to die from cancer, as his dad did as well. My mum was very upset and didn’t want me to tell my friends, except the ones I was supposed to be going out with the next day. My sister was quieter than usual, but seemed happy to cheer me up. I was confused and wanted to talk to a few of my other friends about it, and I wrote a song. My aunt was..well, it’s hard to tell. But I was also angry. People can be angry.
You cannot possibly expect everyone to bottle their emotions up and feel how you want them to feel.
I’m sorry to have to tell you this, but…the world does NOT, never HAS and NEVER WILL revolve around YOU and you alone.
Leave this conversation and let people deal with their cancer.

When my husband was dying of lung cancer, people kept brashly asking, “What’s the prognosis?” I just wanted to say the truth, “We’re too polite to ask the doctors that.” (And we never did, not once. The doctors would have had to tell us and that would have been hard for them, through no fault of their own.) But you can’t deliberately lash out and hurt friends who are trying to come up with an understanding thing to say to you.

You know, a “Ms. Manners” for cancer comments wouldn’t be a bad idea. I know people say a lot of stupid things, but it’s because they are uncomfortable and don’t know what to say. They ramble and stumble into some stupid comment that hurts the other person, but i truly believe it’s not intentional. Of course, some people have no feelings at all for whatever reason, and probably should just keep their mouths shut. 🙂
So, if anyone going through treatment, survivors, spousal survivors, etc. has a suggestion on what they would rather hear, please let those of us who stumble on the “C” word, know what isn’t insensitive so we can show we care.
My usual reaction is a hug, a smile, a little compassion, and they upbeat notion that doctors and treatments have come a long way since early on, and anything is possible. 🙂

I just started seeing someone that has cancer. I think I’ve been good about not saying the wrong things but I have recently said something that was insensitive. I feel awful and would never want to hurt her feelings. So to all that have had to deal with these insensitive comments I do apologize. Some of us do mean well and just don’t know the boundaries of certain topics and some people are just stupid.

I was diagnosed with Hodgkins lymphoma and underwent chemotherapy and radiation. It was nearly nine months of complete hell. It was the Saturday before my last week of radiation. I was out for lunch with a friend of mine and when I told her the upcoming week was my last she said to me, “wow, just one more week? That really went fast for me.”

Wow. I am so glad it went by fast for you, person who didn’t have to do anything. Good for you. I was speechless. The next day I sent her an e-mail telling her how much that may have been an off-the-cuff response to her but that it was really hurtful and insensitive to me. She apologized and we moved past it.

I remember when my girlfriends mother was loosing to cancer and the one real conversation I had with her about cancer was about how her daughter would do after her death. Even though she was on her last lag I never knew If I did more good then bad admitting to her that we knew the end was near and that I thought her daughter would be strong after her death. Should I have lied should I have pretend she was going to make it threw or did I do right admitting that she was close to death… Ill never know and I hate it. But I believe we need to expect life and death and even though I can never understand the pain my girlfriend feels I will be here just like I promised her mom.

If your girlfriends mother was concerned about how her daughter would do without her, then she knew that she was dying. She probably appreciated someone being honest with her and not pretending that things were better than they were. False hope and false sympathy are just irritating. Jo

I was diagnosed last November, up until this day I have done nothing about it. I’ve done nothing because of “positive people” interfering in my life. “Have chemo, it will be good for you”, they said”. “Doctors know best!” I’ve head them all. It saddens me that people who have been through it are just as silly sometimes. “I did it, I’m fine now.” and “if I can do it so can you”. I’m 21 for *&^/ sake. I know a little girl Emma who is 10 and she’s the only one who, seems, to get “it”. She doesn’t have cancer but she has FA which I can never imagine how she must feel. Sorry for the boring if not rather silly “rant” but it’s the truth.

I’m not seeing any specialist as they do my head in but I have an appointment with the surgeon in January and hopefully he will be okay, hopefully he’ll say “lumpectomy then radiotherapy” then that’s dealt with.

There was a girl at my school who was 8 when she was first diagnosed with leukaemia on Christmas Eve. She didn’t smoke, or drink, or eat unhealthily, she didn’t eat tofu but wasn’t a massive meat-eater either, and she did plenty of exercise.
She had treatment.
Then she had a recurrence when she was 13.
More treatment.
A bilateral lung transplant.
An infection.
She died, aged 17.
Young or old, crap immune system or totally fantastic, one-day-cold, never-ill immune system, risk factors or no risk factors…cancer grows. It’s not slowed down by eating healthily. Once it has started growing, it continues growing. Maybe very slowly, hopefully very slowly, so you can have lump-radio. Maybe very fast.
Of course, I respect your choice. Everyone has their own beliefs. Some people are positive, some negative. Some people sign a DNR, some want every tiny chance they have of living. Some people, like my aunt who had metastatic end-stage breast cancer last year, like to try things like Reiki. I just hope you’re entirely sure and you’ve definitely thought it out.
Yes, treatment is horrible. But if you have even the slightest doubt in not wanting treatment, I suggest you try it.

For goodness sake isla. These people you are interacting with are suffering terribly with cancer and you are jumping on the bandwagon! There is nothing wrong with you. You have never been diagnosed with cancer.

I am sorry to call out this fantasist everyone but I must. Unfortunately this little love has been claiming to have cancer for a number of years now and conning a lot of people in the process with various fake medical documents and sob stories etc.

Yes its a bummer that you have done all the “right”things and still have cancer. Life is not fair, and as John Lennon said, ” life is what happens while you are making other plans”. However, blaming others for your delays in seeking treatment also isn’t fair. At 21, you are grown up, and responsible for your own choices. I hope that treatment still goes well for you.

And I must add, that radiation is not a walk in the park either, so if it’s a question of either/or, you’re in for a shocker, Isla. I tolerated chemo very well, thanks to the meds I was provided with. Radiation was a whole other story. Am still having major issues 3 years later because of it. And had to have more radiation earlier this year for another issue, and yet more problems. I would have chosen chemo for that one, had it been available!

What do you feel about diet,nutrition and all this pesticide GMO foods…I do belive there is a link…I have never known a health nut(out of the people i know and know of) to die from cancer.
I am sure you hear this comment a lot too…

I told my sister by phone of my breast cancer diagnosis. Without missing a beat, she said “well at least you had a more interesting life than me. If it were me I wouldn’t do anything about it. It would be romantic to die like Ali McGraw in Love Story”. Next day she called to make sure she was still my beneficiary.

How about being terminally ill with stage IV stomach cancer and an ex-wife calls to ask you questions like, “What’s it feel like to be dying?” and “Why don’t you end it all, I mean, what do you have to live for at this point? Who are you doing this for?”

I am a 2 yr. Breast Cancer survivor, chemo, rads, pretty good long term prognosis and can relate to many posts here. I’ve found I do have to let the ignorant comments just fall off my back and move on or they will interfere with my happiness.
When true friends ask what to say or if they haven’t said the right thing, I’ve told them how it’s funny that they could have said the same comment as an ignorant coworker, but I receive it completely differently. We can see through the intentions and motivations. Knowing when someone is genuine vs. judging is immediate. For example, the post from Marie above talking about her homeopathic ways and how she believes that makes a difference and she won’t ever befall some disease (why is she even posting on this site? She must have been told she’s inconsiderate). I consider these people to be the most selfish and try to ignore and avoid them. I too live a healthier lifestyle and eat better than most of these people, just don’t “preach” it constantly. I believe Cancer is for many the biggest fear, and fast find out whom will truly care and have “empathy”, and those that “claim” to care. They use you as their example to prove to themselves it will never happen to them, then try to make themselves “feel better” by trying to find a way to respond without showing their own fears and insecurity.
It doesn’t matter so much “what” you say, it’s how you say it and how much you really care….

My husband has spent the last six months getting over the shock of and dealing with recurring metastatic melanoma.

We are relieved to finally be home again after having to travel for every surgery, every follow up visit, every new scan and now he’s just finished his radio treatment. I had a belated Christmas Card from my Aunt upon our arrival. The first sentence read – “So sorry to hear of Dan’s bad health it has been a really bad year of cancer I have lost friends loosing them and family is like a jolly plague.”

I ended up laughing. I thought it farsical. Had I received it 6-7 weeks prior, I would have been livid. But our relief to be through this phase and back home made me view it differently.

It made me realise that people just start writing and are processing their thoughts so quickly, they don’t realise what they’re saying as their mind is ahead of their hand. I think this is also true of what people say in person. Their minds take off – their mouths follow and things come out that shouldn’t.

While I accept this, I’ve had numerous annoying remarks, some that have made me view the friend differently – some I no longer see. It’s easier to let go sometimes and maybe, in time, that was going to happen anyway.

The one thing that has helped me get through this is the unexpected and surprising support from friends from afar, or people who I would have only considered aquaintences. That by far has outnumbered the bad. So I feel very lucky to be home, to have my husband, my kids around me and those unexpected beauties of friends to have helped me get here.

I am Jewish. My evangelical, Southern Methodist mother-in-law told me that I needed Jesus to get better. She then sent me a Christian get well card and totally ignore me during me 5 surgeries. She adjudged me a sinner since I did not believe in Jesus. No body wants to hear that stuff when they are facing death.

My thought is that people do not take advantage of their position as columnists for distinguished newspapers in the USA and Britain and use their word counts to excoriate a person with cancer for her choices. THAT is how I got here, and as I read this post and every single comment that has been written, I am hopeful that I am not an idiot when I speak or write, and livid once again at the glibness of what passes for advice these days. I am reminded of when our family went through a serious life changing health event of one of our members, and I was repeatedly told that I was “too angry” when I was honest about how this affected our collective and individual lives- especially the person carrying the actual pain and disability. I could go on, but I am heartened by the fact that some people on this earth do seem to know intuitively what to say or do. I plan to follow in their footsteps.

I found some humor in reading this. I was diagnosed with a rare variety of stage 3c germ cell cancer August of 2012. Since my diagnoses I have fought an uphill battle for my life on many occasions. Those occasions included aggressive chemotherapy to shrink otherwise inoperable tumors closing off my vascular system to my lower extremities in my abdomen as well as very large open surgeries and a thoracotomy to remove teratoma. One thing I have learned is people never really know how bad it is unless they go through it themselves. Even I, having gone through what I have, never really remember how bad it really was. When people say ignorant things to me sometimes it does really bother me, but I have learned to try and appreciate it for what it is. But i do have to say “stay positive” and “what type of cancer is it” are my two least favorite. Like others have stated, most of the time people dont really know what to say. So I try and appreciate the effort and let it go. I am not religious myself, but I do appreciate people praying for me. The fact is they are taking time out of their day to think about Me. That’s pretty powerful no matter what your faith. Peoples time is the most valuable thing of all. The people that came into my life just so they could say they had a friend with cancer are the ones that i find inexcusable. I even had a old friend come out of the woodwork and act really helpful and involved when the fact is she actually didnt DO anything, she just used the fact they were”helping” a “friend” that has cancer just so they could get ahead in their real estate career. Pretty disgusting. I only have a few friends now that I had before cancer, but I have made more friends than I have lost in people that reached out to help.

I just heard about your story on NPR. I am stage 3 IDC triple negative having finished 12 weeks of taxol and just finished my 2nd cycle of AC and currently participating in a clinical trial. Thank you so much for this blog post. I am so tired of hearing people tell me that it will soon be over, or be positive, or blah blah blah. I wish people would just make me a meal or offer to take my daughter and this just go away. There is absolutely nothing anyone can say that will make you feel better about this situation so I wish they would just shut up. Maybe that sounds harsh, but maybe you get where I am coming from. Good luck to you with your upcoming treatments and keep telling people the way it really is!

Lisa, thank you for writing this post, and thank you to everyone who has posted their experiences of this issue. I wish that I had found it earlier, because it would have helped me greatly.

I’m a couple of months out from end of active treatment for ILBC, diagnosed in January 2013.

I have laughed and gasped in horror at some of the awful things people have said to those with cancer. I have laughed at some of the very witty and succinct comebacks too.

When I was diagnosed I was determined to keep it between me, my partner, the docs and nurses and only very close friends and family. I was persuaded (much to my better judgement) by the breast care nurse that I should tell everyone. I didn’t do this exactly, but as I went through diagnosis it became particularly awkward giving excuses as to why I couldn’t attend social functions or return work calls within a good time. So I started to tell a few people as it was needed. I wish I had stuck to my guns and not told anyone.

My contribution:
The newish friend of less than one year, who, when I told her of my diagnosis started loudly crying and wailing with “it’s been a horrid year for me and now my best friend has got breast cancer and I know she’s going to die” I drew her attention to the fact that it was me that had the cancer, not even the doctors know how effective treatment will be so she needed to accept that. She was oblivious and carried on, so I got up and left the café we were in. People were starting to stare (at her)

I later learned that she had gone around telling probably about 20 people who I didn’t even know, that I had cancer and was going to die.

The other friend who seemed to be overjoyed that I had the diagnosis because it gave her free rein to tell me in very specific detail about her late friend who had breast cancer and died in screaming agony with tumours growing out of her back” – this seems to be a theme in breast cancer horror stories told to those who have breast cancer by those who don’t. I came across another lady who had been told this by a friend also.

The same friend would ring me at least weekly to tell me how yet another person in her dance group had been diagnosed with breast cancer and it must be an epidemic. When she discovered that one woman at the same dance group had been diagnosed and was well into treatment, but hadn’t told her, she was livid! There was no empathy from the friend about this news towards the woman who was in treatment, just outrage that she hadn’t been the first person to be told about it. The lady in treatment then got bombarded (as I did) by loads of inappropriate gifts, cards, phone calls from the friend.

I came to realise that this friend was not a friend at all. She was a prurient narcissist who got off on being friends with women who had breast cancer. Her friendship felt like I was suddenly a fridge magnet in a large collection of fridge magnets.

She would ring at the most inopportune times to demand that I came over in the heat of July (and chemo) to swim in her pool. I had told her at least six times that swimming was out because I had a Hickman Line and my oncologist said that the risk of infection was too great. This meant nothing to the friend. She kept on telling me that I should swim to lose the “disgusting blubber” – yep steroid weight gain, referred to as “disgusting blubber”

Through this experience of cancer I have been astonished and appalled in equal measure at the behaviour of some of those who I told about my diagnosis. I have also been delighted and touched when someone who may not be a friend or close in any way said something genuinely kind or helped me out when I couldn’t manage something. The little things, the things that might not seem important, were very important to me.

Back to the grim friend…
She would fill my inbox with demanding emails that I ring her and update her on every aspect of my treatment (I didn’t do this) but when I told her how treatment was, she would become very snippy and start making snide comments to the effect that I was making a big thing out of having cancer and she knew a woman who was “dancing better than ever” at the ballet class just a couple of weeks after bilateral MX (yeah right)

One weekend I was in the middle of a massive infection (courtesy of chemo) and nursing my little cat who had just presented with an untreatable and widely spread adenocarcinoma of the rectum. The day before he was due to be PTS at home, the narc friend rang and demanded to speak to me. My partner took the call, I was too ill and using the little energy I had to make the my very sick cat comfortable. He told the friend that sorry, I was very unwell still and not able to talk, she told him “yes, I’ve been very ill too” and put the phone down.

Another friend, this time a male, who when I told him of the diagnosis said “hey, marvellous, are you gonna get reconstruction? are you gonna go BIGGER?” whilst demonstrating with his hands just how big he would like my breasts to be.

Same friend regaled me with the tale of another female friend of his who had lung cancer and “these days it’s nothing” “breast cancer is nothing” and the classic “you are lucky, you can give up work and get state benefits now”

The old friend, currently trying to get back in friendship with me who sends me emails telling me how “thinking positive” will cure me of cancer and all the negativity from my life. She knows this is true because she uses “Cosmic Ordering” and all I have to do is think of my breasts free of cancer and they will be. I can’t even bring myself to reply to this one, mainly because after one year of treatment, I just can’t be bothered to be polite anymore to idiots like this. That’s my failing I know.

The man in the Post Office who told me his wife had been through treatment for breast cancer and it made her a “better person” but it had also made her fat and that when the cancer came back she lost weight which he liked “it might do the same for you love” he said, eyeing me up and down in a lecherous way ugh.

The neighbour who told me that cancer was god’s punishment on those who don’t believe in him. She knows I am an atheist, so she saw my cancer as the perfect vehicle for her disapproval of my atheism.

The receptionist in the GP surgery who let me know that “lots of women get their cancer detected early, but it doesn’t matter because it will always come back and kill them” – I put in a formal complaint about that one, I hope she got some education, not just a telling off.

The naturopath wife of an old school friend who wrote to me with the wisdom that I should have listened to her years ago about thinking negatively, because I was now “enjoying the fruit of your negative foolishness” and because I chose to go with the treatments the surgeons and oncologists recommended, that I was asking for nothing but more cancer. Apparently “all the doctors wanna do is make big money out of you and poison you with drugs that will definitely give you more cancer” Like an angry teen, I tore up her letter and posted it back to her in the envelope it came in and didn’t put another stamp on it, so the postie would knock her door and ask for payment. It felt good to do that, I knew from experience that she is one person who will not be swayed by any rational argument or education.

One thing that having cancer has taught me is that I am now unable to tolerate even one molecule of BS from anyone.

I can laugh about some of these comments I’ve had. I do know that in one case the person was really struggling to find something to say and probably did mean well. However, I was brought up to be kind and thoughtful around people, especially those who are going through difficulties in life be they from illness or just life. I wasn’t brought up to expect the person having the tough time to be responsible for my happiness and put up with me being rude to them.

The funniest one was a colleague who when she learned I was doing chemo, told me that losing my hair would be a good thing because it would let me feel how terrible she felt having bad hair. Apparently my waist length, thick and glorious (and now long gone and replaced with something akin to a badger with mange) hair was a cause of immense jealousy for this colleague.

Love, love, love your “badger with mange” description. I wasn’t blessed with lovely locks to beginwith, but what little there is now looks thin and flat on top with brillo bits around the sides.
Thanks for your well written responses too!
Meg

A very good friend of mine was diagnosed with lung cancer (actually, it just came back). I was at work – and upset, scared & angry. My co-worker launched into his “You have to stay positive,” “everything will be OK” — veered off into his “My mother died of cancer” and somehow ended his monologue by patting himself on the back about how he always says the right things in situations like this. When I told him that unless he is in the medical profession and has some inside knowledge on my friend’s case, then I’d prefer if he didn’t dismiss my feelings with “It’s going to be OK.” He then became combative and insisted that I just have to be positive.
After listening to my co-worker and noting how all of his comments made *me* feel, I certainly won’t be saying things like that to my friend.

I was diagnosed with a brain tumour when I was 28 (GBM) and I reckon the very best comment came from my brother, who is 13 years older than me: While waiting in pre-op for emergency resection he leant over my bed and said, “don’t worry Jen. I know exactly how you feel. I’ve got a really sore ear.” I still laugh at the ridiculousness of it to this day! That comment didn’t bother me because I always knew he was an idiot, but the comment that did bother me came from my “best” friend of 20 years. She knew I had a terminal illness but didn’t skip a beat when she said to me “Every morning I wake up and think, ugh, am I still alive.” I was still having chemo at the time and had just come from an MRI scan to check for recurrence. She didn’t even ask how the scan was. I’m not friends with her anymore, but I still marvel at the insensitive nature of that comment. To think she works in human services now!

I had many, many insensitive comments made to me during my treatment, recovery and to this day, but there are only about 4 or 5 that really bothered me and I still think about them occasionally even though it’s been ten years since I was first diagnosed. Most of them came from medical professionals. The comments that bothered me most came from people who I cared about (my family and close friends) or who I was relying on (ie. the medical professionals), not really from random people, co-workers or two-bit friends and acquaintances.

For the most part I really thought that people weren’t trying to be insensitive or hurtful, they just didn’t know what to say. It was kind of like they lost the connection between their brain and their mouth, which happens often in human interaction, even when it’s got nothing to do with cancer.

Recently my other, older brother, who was very supportive during my treatment and often drove me the 8 hour round trip to the hospital for check-ups and stuff said, “I hope your brain tumour grows back and you die.” I think that’s probably about the worst comment you could get from anyone really. It kind of trumps all the other little inane ones I’ve heard in the years since I was diagnosed! I like to think that he regretted saying that (ie. no brain-mouth connection), but ultimately that comment is about him and his place in the universe, it’s really got nothing to do with me, much like the numerous other stupid things people said to me during my treatment and recovery.

I am so sorry that you had to endure those awful comments. Those comments are disgusting. I had a “friend ” who told me that SHE never gets sick , (unlike me who had cancer), SHE never gets sick , as SHE thinks positively. Where do those idiots get such insane theories? I looked at her and thought…just wait, the game’s not over yet. I should have said it to her. Then she merrily told me that “a prestigious researcher has discovered that eating excrement cures cancer”. I was disgusted at her audacity and evil intent. I told her to give me the “article”, to give me the name of the researcher, to give me the hospital/research institute….Oh dear, she could not remember those details. But she swore that it is true!!!!!
Of course, she is now a former friend. It’s bad enough to have cancer, but to have those mean-spirited, narcissistic so-called friends taunt us, is beyond the pale. I wished that I had never told ANYONE but my small family.

Having just read through this entire list of comments….I was diagnosed with BC in October 2013 and will start chemo in about 10 days. I found your blog, Lisa, not very long after my initial diagnosis, and I read a few of the comments in this thread, enough to get a taste of what I might be in for. It gave me some ideas on how to manage my situation.

At first I only told two supervisors at work, a couple family members, and a couple friends. I only shared with people I trusted not to blow me away with their own fear and reactions. After I learned enough details to give an outline of my expected course of care, I shared with coworkers, who are nurses. I told them as a group and said that I would not be able to carry the load of all their feelings and reactions, and that I did not want to hear “war stories” about all the people they knew who had dealt with cancer. For the most part they have respected this, but I have to stay vigilant, and occasionally I have to cut someone off when they start telling me the details of someone else’s cancer story. “Excuse me, sorry, but I really can’t take in the details of someone else’s cancer story, can we talk about something else? How bout those Seahawks?” I’m really clear that I intend to spare myself the added suffering of listening to everyone’s story.

I understand the purpose of the blog, that those who come in here to share don’t have to “play nice” or “look good” or hide their feelings. Your blog has been extremely helpful to me in various ways. I know myself well enough to know that anger is often a coverup for fear. Fear has definitely been a companion to me since October. But I’m not going to let fear take my life, and I’m not going to let cancer have me. That’s how I feel today, because I still have strength. After 3 rounds of Cytoxan/taxotere we shall see what song I sing.

My stating my truth, my way of handling it, how I am managing it today, is not a judgment on how someone else decides to do it. The challenge of staying positive, of looking for the good in people, of keeping fear of the unknown at bay, that challenge is not new since cancer. That’s why it’s called a spiritual practice. You have to practice it. I may feel differently in a few weeks, after the toll of treatment has been extracted from my being. But for me, if I’m going to stay alive, I have to stay positive. I know that about myself. There are moments, hours, days, in which I struggle to stay positive. This is not new since cancer. In those moments of doubt, fear, and anger, I turn to trusted people, who listen, but who bring me back to the present moment. “Find something beautiful…” isn’t that the mantra that Lisa tells us? That finding is always found in the present moment.

I did read the other post which describes how people ought to “do it right” when talking to someone with cancer. I think what’s written there is a good effort and may help some people. But I think humanity is humanity. Some people are more considerate, have more emotional intelligence, and most don’t. As in life before cancer, it’s up to me to keep a good boundary, and enforce it to people who don’t have the good sense to notice a boundary line. Tact was not my strongest suit before cancer, so I don’t overexpect myself to be any better at it now that cancer is in my daily awareness. So if I pass the opportunity to overlook, and instead I am curt with someone who says something stupid, even if well meaning, oh well. I give me permission to take care of me instead of someone else.

The hardest part so far has been my own grief. Grief over…you know…losing the integrity of my body, having to have it cut open, knowing that recurrence is frequent, realizing there will be long term health risks due to treatment. In general I know the cancer is Stage II, but I have not asked for the details on type/stage/prognosis. It will cause me too much grief and it will paralyze me. Grief has been my worst emotional experience so far. But I have moved through it, which had to happen before I could get past the fear of treatment. I still feel grief, fear, and anger. But it’s not defining me and it’s not going to stop me from moving forward.

Someone way up in the list described her experiences supporting her son, her name is homa bird and she posted in July 2013. She said things like the journey had brought her spiritual growth, had burned away the chaff, had woven sorrow, suffering, and joy into a gorgeous cloth. She said, some people have said things which turned out to be ugly, ignorant, hurtful, and so the hell what?

Someone else disagreed with homa bird and said she had no right to say how it ought to be since she herself was not the person with cancer. I can’t agree with that because my husband knows chapter and verse what I’m going through and he is going through it too. His observations are certainly valid and contribute to the greater understanding. We are all in this together.

As homa bird alluded, I also have spent my adult life learning to take the tragedy that life throws in your path, take it and use it to make something better about yourself or how you deal with life. So thank you, homa bird, it is so good to meet a kindred spirit. And in the second case, the so the hell what part, I’m going to take that as good advice, homa bird. I have too much in my backpack right now to let the comments of peripheral people weigh me down.

My close friends, my husband, my sister, and some of my colleagues, none of them has said anything that I would remotely interpret as hurtful or stupid. Maybe I’m just lucky that way. Some people’s stories above are astounding and I am sorry that you have had those experiences. This blog, and the recent attention that it has received in the press, will help change the awareness. For some people. Over time.

Human suffering, it is what it is. Grace, dignity, and mercy, are my daily prayers, the antidote to suffering.

Hi Helen, thank you for asking. I’ve had my second chemo infusion (they are 3 wks apart) and I have two more infusions coming up, and they are recommending radiation which I may decline. The second infusion hit me hard in the energy department. I could not even talk much (if I am not talking, better check for a pulse!), but I am 10 days post infusion and going in to the office today for 2 hours. My hair is all off. That was not a blow to my vanity as much as a wakeup call to the fact of life threat. Since my original post I have heard a few of the “objectionable” comments that so many have said above. Two friends gently commented that going back to work might help me “get my mind off things” and it kind of pissed me off. First of all, reaction to treatment is quite individual. Also, I am not one to push my emotional life under the rug in favor of frenetic activity to “get my mind off things”. If ever there is a time to dive deep, for me, this is it. My time since diagnosis has been about life review, about actively looking into what is bothering me about life, about making new choices and affirming the good choices I’ve made, about integrating myself into a more coherent person. There is no “work” or “job” more important than investing in myself at this time. I have had the luxury of being home because my husband has been able to support us (barely). We live very low on the food chain, by choice, but it’s been a struggle for him. In any case, Helen, thank you for asking. Just this weekend I found my mind returning to the everyday. I am fortunate that whatever inner guidance I have, it is pointing me to look outward now, to get started on returning myself to a work environment (nursing), to again plan to be a co-provider in our household. The work of integration is done for now. Time to again be in the stream of life. I feel very, very fortunate. And I know that the chance of reoccurrence is high. That knowledge, that knowing, is kept on the back burner. I never want to be surprised by a reoccurrence, but I am aiming for my 80th birthday (in 23 years!) and after that, it’s gravy. Sorry if my optimism is corrosive to others who do not feel as fortunate. I continue to tune in to Lisa’s blog because I receive so much strength, as well as practical tips on how to manage this part of my journey. Peace and love to all fellow travelers.

A further comment, in case anyone is interested. The subject of “staying positive” has come up in many stories here. May I just share a perspective that some may find helpful? For me, staying positive is not about preventing cancer (or heart attack, or stroke, or whatever). Staying positive is about the present moment, and how I feel about it. It is not always possible for me to feel mentally, emotionally, or spiritually “positive”, moment to moment. Over time I have learned to turn toward the positive, trust it is there. Through experience I learned the importance of being authentic to what I actually feel. Many, many times, what I feel is not positive. In that moment, I breathe, and close my eyes, and feel it, and name it. Rage, betrayal, jealousy, victimhood, revenge, fear, worry. Breathe. It goes through my body like an adrenaline rush, or it pins me to the floor, breathless, or sidelines me to the couch, grounded. Breathe. Use the mind to turn toward the positive, toward the trust, stay aware of feeling in the body. This will pass. Breathe. A practice, it becomes automatic, embodied breath. It is about the present moment, which is easier to endure, under a practice of staying positive, and which yields acceptance, if not peace, with practice. Acceptance and peace may lead to joy. Not always. Joy for the journey. Peace out. Karuna

My Mum was diagnosed with stage III Inflammatory breast cancer in 2007 and had a mastectomy in 2009. Just before this christmas she had a severe pain around her chest and we went to hospital….. they just did not get it that is might be a spinal compression even though all the sites i read (after) clearly state there is a % chance it can happen. Well after 10 hours of being admitted she got up to go the the bathroom went back to bed and became paraplegic. It has now been 50 days she had 5 radio sessions and no positive response so that is it.

The dr and nurses speak about we now need to focus on quality of life but no one is really saying for how long she can live like this. CT Scan shows that the cancer is in the spine, pelvis and femur.

People come to visit and i have started to need to move out of the room because of the things they say…..You will get better, you will walk again what do they know !!!! Have they spoken to a different doctor…… It is so frustrating the words in the sone You say it best when you say nothing at all (ronan keating) are so appropriate in such cases.

My mum now seems focused on things to give us before she dies, telling me what to do in the house with dad when she dies etc….

In a way i think that this might be part of the porcess but I can see her get so depressed and not sure whether the end is near.

The reality is that no one can predict how long your mum will live. It depends on how aggressively she is treated and her will to live. Her paraplegia is also a factor as she is at higher risk for urinary tract infections, bedsores,etc.

She sounds realistic and needs to know that you and your dad will cope without her. She is entitled to be depressed.

If family celebrations are for the day, personal celebrations are for
night. A lot of baby shower party ideas can be used for food items and can range from sandwiches, burgers,
alcoholic drinks or soft drinks. That, however, tended to be that and,
aside from sticking your favourites in an album there wasn’t a lot else that you could do.

I think it’s probably true, way more often than not, that people (friends, family and maybe even people we don’t know well) -who demonstrate that they are moved to offer sentiments/words regarding another individual’s beyond difficult health crisis/challenge- do so in earnest empathy with a goal to support and encourage. People don’t always know, exactly, what to say to someone who is facing a life-altering/life-threatening illness. It’s an emotional endeavor to attempt to support in words…and ‘feeling’ deeply for another can have a way of scrambling thoughts in a raw moment. But, generally, a perceived lack of success regarding delivery of ‘the right words’ does not reflect ignorance or “stupidity”. It’s, probably, more complex than that.

It’s helpful…it facilitates connection and understanding between hearts and minds when we invest, first, in recognizing the intent/the spirit of the words/sentiment offered. For the most part, as human beings, we have the intuitive ability to determine the motivation behind words. In other words, we can recognize someone’s true heart by their words -even if their chosen words are less than eloquent or, even, appropriate for the circumstance. Ultimately, the spirit of intent is what should guide perception of the effort.

I so wish you were right, and I’m sure that sometimes that is the case. But unfortunately, all to often, it’s clear that a person is really mean and insensitive. At least that’s what I’ve found. Thankfully I have many other friends who are kind and sensitive.

Old Mangy Badger Hair back again with a recent experience of what not to say.

A few weeks ago, because I am very interested in human/animal interaction (it’s part of my work) I responded to a very detailed survey on pet bereavement where I had referred to the loss of my little cat who was pts due to an very fast growing, untreatable adenocarcinoma. This had taken place when I was going through chemo and a very nasty chemo-ending infection. One section of the survey asked about where I was in terms of the beginning, middle or resolution stage of grief for my lost pet.

I felt that due to the giant skewing effect of the cancer carnival plus chemo+infection, followed by endless rads, (and the then new joy of scanxiety for my first follow up mammogram) my grieving was going much more slowly and I was somewhere in the middle of the grieving process.

The survey was being organised by an online author who claims to be an holistic pet behaviourist. Now as I understand it, those who claim “holistic” anything in their job title, should perhaps be sensitive to the whole person. Holistic means whole doesn’t it?

A few days after submitting my survey response I got an email back from the author. The author was very polite in thanking me for my response. However, the author went on to tell me that it was “common knowledge” that when a human in the house gets cancer it is very common that a pet develops cancer too. The author then recommended that I read the website of some quack vet who had “proved” this “fact” Helpfully, she included the link to the quack’s site too.

Am I alone in thinking that implying that someone caused their pet’s cancer by having cancer themselves is just a tad insensitive if not totally crass and rather cruel?

Apparently not. I told my oncologist and also the veterinary oncologist about what had been written. Both wanted to know the contact details of the author, so she might get a little education about cancer. I didn’t tell them who she is, both left me in no doubt that they wouldn’t be mincing their words. My oncologist was furious about it and tried to get the author’s contact details off me several times. He’s normally a gentle soul, very kind and humane, but he was very angry that day.

When I first read the author’s email, I had to read it a few times to check that I hadn’t made a mistake. I got my partner to read it, he confirmed it. I had just been told that my breast cancer had probably caused my cat’s bum cancer and killed him.

I garnered every bit of self control I had and wrote back to her thanking her for her “suggestion” but I wouldn’t be looking into the veracity of her claims at this time. All I wanted to do was rip her a new one. But I didn’t. Yay me. That lady doesn’t need more orifices to expel any more of the brown stuff. She has plenty of them working just fine it seems.

I hope I haven’t offended anyone with my references to “quacks” I am not against integrative medicine and use it myself as I am lucky enough to have access through the oncology unit to very good palliative/integrative doctors, who have helped me make treatment decisions when I was in no fit state to make them.

I just wanted to get it down here that it’s worth being wary of folk who seem to promote themselves as developed, aware souls who love the world and everything in it. They can be every bit as nasty as anyone else.

Oh oh Another worry I may have, that my cat Merlin may take sick with cancer of either the ass or the penis and my breast cancer would be blamed for that. I’m thinking that vet really is a QUACK for having the temerity to say that, meaning no irreverence to alternative medical practitioners, since I would also go see a good naturopathic oncologist in a heartbeat for further advice on alternative / complementary treatments if given a choice.

Could you please help us know what to say? A friend of mine has cancer, while I fight Lyme disease. His prognosis is death, and mine is unknown. Right now, and for the last 9 months, I feel sicker than he does. He feels mostly fine right now, but eventually, whether in three years or 10 won’t be around anymore.

I have live 2 years past what I was told. I just want to be held, but this cancer as robed me the simple things. If had money I would go to you and hug you all night. We are who we are. the death sentience will not win, we are more than this. God bless use.

[…] today I read Lisa’s blog again and also one of her older posts about the stupid things people say to those with cancer and their families and it’s very insightful. Anyone who is interested now .. meaning before they might be struck […]

One classic phrase I’m sick and tired of is: “God will never test you beyond your limits.” To which I responded: “What if my limit is death?” Their response: “Oh well, so be it!” Oh, gee, thanks so very much! That’s the church crowd for you! I sought them out to be fortified and all I got was crucified!

That’s the one that bothers me the most – almost makes the hair on my neck (if there was any 🙂 stand on end. I’m a Christian, and believe that using that statement so recklessly and without compassion can be very hurtful, and in my opinion, is used very out of context. I think the verse that people often base that statement from is 1 Corinthians 10:13 that says: “And God is faithful; he will not let you be tempted beyond what you can bear.” I’m a lay person, but it seems to me that being tempted is much different than being tested or having an illness.

I’m totally with you on this one Michael. Please take good care of yourself!!

Speaking of saying stupid (or inappropriate) things, I have recently been made aware that even fellow cancer patients themselves don’t always know the right thing to say. Case in point, at our (their) last support group meeting, I was trying to speak with one of the members about my cancer and kidney removal, and my concerns for the outcome, and I was simply told “Don’t worry about it, you have a spare!” Now in my book, that was dismissing, minimizing and trivializing my condition while drawing attention to her own. I would love to confront them and ask: “So tell me ladies, does this “Don’t worry about it, you have a spare” business also apply to breasts?!!” No? Why not? (Three cheers for double standards!) Contrary to popular belief, the human body does NOT have “spare parts”! If God (or Nature) gave you two of something, you are supposed to have two of something! Both are vital, and one is not a “spare”!!! After telling me not to worry about my situation, ironically, (or hypocritically), that very same person then began complaining to the group about her own situation! I was not aware that a “support” group was a contest! I thought everyone mattered! The message I have received on more than one occasion is that my kind of cancer and my concerns aren’t as important as everyone else’s. I’m wondering if their “acceptance” of me might have been a bit more sincere had I been female. (I’m the only male in the group.) It would be nice to actually be accepted, not simply tolerated!

Well, your concerns do matter to me!! I totally understand what you’re talking about. I’ve had very similar experiences in a support group. I left feeling, well…. unsupported. I felt like I was only supposed to say “all is well”, instead of “this is where I’m at, and I’m scared or worried”. You can say it all here Michael. I’ll listen anytime. Your concerns are very valid. It is YOU after all, that is going through all that you are.

Here are the details of my cancer journey. It all began toward the end of 2012, when a routine CT scan revealed dark areas on my left kidney and spleen. Immediately the verdict was cancer, but I was not satisfied. I insisted on having a biopsy on each organ. The biopsy results were negative for the spleen, but positive for the kidney. The medical term was stage 2 renal cell carcinoma. There was uncertainty regarding the spleen, so they showed the CT results to a gastro interologist. He said not to worry about it and leave it alone. Nothing to worry about. What puzzles me is that the biopsies were not automatic, I had to insist on them. Well anyway, after they had convinced me, we proceeded to schedule my surgery. (May 7, 2013) The surgery went off without a hitch, and after a week’s stay in the hospital, they transferred me to a local care home for the remainder of my recuperation. The surgery was laprascopic, keeping it minimally invasive. Since I live alone, I couldn’t afford a long recovery. There were four mini incisions about the size of a quarter along my left side for inserting the instruments, and a six-inch vertical incision just above the left hip for the kidney removal. Basically four stab wounds and a six-inch gash! Chemo and radiation were never even mentioned. I guess they felt it was unnecessary. During the week in the hospital and the two following weeks at the care home, I didn’t have one single visitor! Not a one! In fact, I haven’t heard from anyone since June of 2013! And the ones I call “friends” are people I’ve known since high school! I graduated high school in 1974, so these are people I’ve known for a LONG time! (Or thought I knew!) The last “friend” I spoke with back in June of 2013 didn’t seem to be particularly interested in my experience. When telling him I was still feeling occasional pain and discomfort, he casually replied “Oh that’s just a phantom pain.” I was still healing from five deep tissue incisions mind you, and he insinuated my discomfort was simply imaginary! Boy, talk about being there for you! Great friend, huh?! For the record, scar tissue is a lot more sensitive than normal tissue, so occasional pain and discomfort are very common. And since scars are permanent, then occasional pains are common too, even months or years later. Sometimes I get the impression that I “deliberately” went out and contracted cancer, then had major surgery, all for the sole purpose of inconveniencing everyone else! Well excuse me!!! Since this experience, I’m not exactly the same person I used to be, thinking differently, feeling differently. Changes in values, changes in priorities, changes in behavior. Life-saving experiences will do that to a person! Sadly, these are changes that most people find unacceptable. To such people I can only say “Since you played no part in my illness or recovery, you have no say in who I have become!”

Wow Michael. I’m stunned that you actually had to ask for biopsies! Never heard of that before. I’m so glad that you insisted on them!!

It’s so sad and hard to have “friends” disappear when things get tough. Cancer is one of the toughest things you can go through, and it makes it even harder when people bail on us. I think that sometimes it’s their own fear that allows that to happen. Maybe it makes them think that if it could happen to you, it could happen to them too. Which it can. I’ve found that some people get really uneasy around challenges and suffering. Not that we like it all that much!! 🙂

I totally understand about the pain at the scars. I had breast cancer, and had a lumpectomy in December 2012. Lately I have been having some pains there. And I just had my port removed two weeks ago, and I definitely feel pain there — not terrible, at least not compared to some of the pain I’ve had, but it is pain.

Last year, just after finishing radiation, I found a lump in my neck. Someone said very sarcastically to me that “oh sure, now every little thing will be a worry”. How insulting! My oncologist wanted an ultrasound done on it, and thankfully it was not cancer. But the ultrasound tech said that she tells all her cancer patients to be viligent and not to ignore anything. It’s our bodies and we know them best. I’m glad that I had it checked out to put my mind at ease, and frankly, if it was something, I’d want to start treating sooner rather than later.

It can really be tough sometimes, Michael, and it can be shocking when you feel abandoned by people you’ve known so long in your biggest time of need. I’m so sorry that all of this had to happen to you.

Totally agree with you that after such a big life event, and facing our own mortalities, we can’t be the same. And in some strange way, there’s a blessing in that. I’m glad to meet you here. There’s a sort of understanding here that you can’t find everywhere.

I will get notified of any new posts here, so feel free to write more. It can be really healthy, and it’s nice to make a new cyber-friend.

Take good care of yourself, Michael. No matter how anyone else has treated you, you are more than worth it!!

Oh here’s a hoot for you! Something I forgot to mention in my previous correspondences. Prior to the biopsies being performed, cancer was not a diagnosis, just an educated guess! In fact the doctors didn’t want me to have the biopsies at all. Their reason being: If it was indeed cancer, performing the biopsy might cause a tiny piece of the cancer to break off and spread. When asked how then can we know for sure if it’s truly cancer, they said: “Oh we won’t know for sure until the kidney had been removed.” Removing a fully functional organ based on a hunch! In other words: “First we’ll chop off your leg, THEN we’ll check for gangrene!” Now we know why it’s called “practicing” medicine! Frankly, I’m not sure if my survival should be thanks to the doctors, or no thanks to the doctors! Gems such as this are why I came up with the following rhyme years ago:
Another botched exam, another needless pill;
If the illness doesn’t kill you, the treatment surely will!

I have lost two ‘ good friends’ plus a canoe. I don’t drive so it’s hard to get a ride and the bus is very expensive. Sometimes I don’t care, sometimes I cry. I have had the brain cancer about 4 years. I lot of people think I am fine. Dreams, meds, Dr. appt. less food, I can go one and one.

I am 15 and have AML, and recently a lady who was supposed to be a volunteer at the hospital I go to, pulled me aside to talk after I said I just wish this would end and she told me “It’s ok to let go, just give up. Your parents would understand!” I felt so depressed and wanted to slap her. I’ve been fighting since I was 2, that makes 13 years and I’m not giving up now.

As I have suspected, my experience with the stupid things is not typical, because I (am able) to limit my contacts with other people, and because I have only been at this for six months, not years. I’ve got comments written above that are all about giving grace to stupidity, grace to those trying but not knowing how, basically about giving others the benefit of the doubt.

This week I finally hit the wall with all this and I believe those who “listen in” here will identify. What totally ripped me off this week was when several rounds of Facebook posts started going around. The idea is identified as a “challenge” and you are supposed to “take and post a selfie without wearing makeup to support breast cancer awareness.” Then you nominate someone else to do the same.

I object, and I object strenuously, that someone having the CHOICE to take a picture without makeup is supportive. Personally I have never worn makeup since a brief period in my 20s. I’m allergic to all of it, except I can and do wear vegan lipstick. Therefore, I don’t know what it’s like to, horror of horrors, be seen “without makeup”. Even if it IS a challenge to be seen without makeup, I mean seriously, does anybody think for a minute that it BEGINS to come close to the challenge of cancer? And if I look at myself in the mirror every day, bald, my skin starting to shrivel at a rapid rate no matter what kind of cream or salve, bagsand circles under my eyes….do I want to see happy happy joy joy pictures on my FB page of people without cancer who have the choice of trying to approximate that look?

How loud can I scream? What shall I scream? Well what I did was I posted two things on Facebook and the second one is a picture of myself in all my bald glory, a week after my third infusion. I look half dead. My eyes have no sparkle, none whatsoever, the blue eyes that have ALWAYS sparkled back at me. Do you think any of those selfies without makeup are going to look as bad as that? I don’t want or need sympathy. Sympathy makes me feel like a victim. I certainly don’t want or need STUPIDITY.

What was so curious to me, and surprising, was the total lack of concern I feel for these other people’s feelings when it comes to this. Husband says, like I said above, they want to do something, they don’t know what to do. Yes, it’s true, so the only defense is a good offense. I posted two links to Lisa’s essays (stupid things, how to not say stupid things). I hope some people will find their way here.

Now, after this rant, I am going upstairs to do Kundalini yoga for lymphatic circulation, it’s a great DVD by Gurmukh and Snatam Kaur Khalsa. It moves the energy, it takes the anger and abuse away, it elevates my vibe with chant, rhythm, and soothing, healing vibes. Peace, love, health and wellness to all fellow travelers. Thank you for listening, for being here.

Love and hugs to you, Lisa, I read your post today. Love, love, love. If I could carry some of your load I surely would. Peace out.

Dearest Karuna – OMG! You have NAILED exactly my feelings on those moronic pics I see everywhere, in every publication, all over. You could not have said it better or more strongly. I found the reason for this sudden trend highly insulting as well. How stupid people are to think that if they scrub off their paint and smokey eyes – voila! – they will be supporting people that do not, or can not – wear a mask on their real faces. Real faces that show real life. Beautiful, ugly, painful, honest, real life. Life that has a zit, a cold sore, enlarged pores, no eyebrows, or well-traveled bags. Faces are beautiful. Each one is unique. The others – the painted ones – all strive to look alike. And they’re false. All of them. This ‘fad’ will fade – these people will have done their shallow bit for support and move on to another cause. They are…sheep. I applaud you totally. Sending warm positive support and smiles to you!

Thank you, Pamela. On the posts to FB that I mention above, about 10 people “liked” my comments and some went into detail on their agreement with what you and I feel about this. I have a love/hate relationship with FB. Some people get all uppity if you move outside the boundary lines of kitty cats and baby pictures. Fine. That’s where they live. Me, I’m a spelunker. I dive deep. So my FB page is full of good stuff. If someone doesn’t like it, I invite them to unfriend me in the friendliest way. I am not “friend” material for just everybody, either on FB or in 3D. Just visited with my naturopathic oncologist, and he also had seen the stupid pics all over, for the same “cause”, and he also thinks it is STUPID. But hey, lots of stupid people out there, and blissfully so. I just want to encourage each and every one of us to take Lisa’s example and speak up about the stupidity. I turned it around and said, “why not post a picture of yourself eating a plate full of vegetables, which prevent cancer? I bet a plate with 50% of the meal as vegetables is an impossibility for some of you. Now THAT would be a challenge. Being photographed without makeup, that’s a Choice, not a challenge. Bah.” Glad I don’t live there.

I have been so burned by ” friends” I have so much to say, but who cares cancer does not suck, it’s other people who rise above the cancel and say ” you should have listened” I have GBM brain cancer. You want my story? ask I want to tell.

Yes Patrick – you can share your story here. Glioblastoma Multiform? My son has this now – on oral chemo now – had 8 weeks whole-brain radiation several years back. This is a good group and I’m thinking it will be a good place for you to be. Lots of losses for you. Friends, ideas for a future you thought might be, and….a canoe. All move to top of the list on any given moment, don’t they? Along with hassles of moving through your life now – things not apparent to someone on the outside looking in. But many here can understand…

Know I’m late to this, and can’t read through the responses, but the root of such attitudes is a very simple and universal mechanism in human psychology: the optimism bias.

All of your “look on the bright side” platitudes issue from this one quirk of advanced primate cognition. It is, as they say, an ‘evolved’ trait which in our “ancestral environment” conferred “greater fitness” — i.e. it was healthier to assume a favorable outcome than an unfavorable one, which tends to inhibit action, and more often leads to you being eaten, killed, starving, etc. The optimistic primate believes there is more fruit in the next valley, and so takes the risk; the pessimistic one doesn’t take it, and therefore removes the possibility of reward.

Unfortunately, our ancestors did not have to deal with terminal illnesses, and did not have a complex repertoire of concepts in “coming to terms” with such debilities that were persistent (injuries, blindness, etc.) in their environment.

Psychologically, it makes no sense for an organism to be “negative”, or to live in a state of self-negation. What all of those people were doing to you was simply protecting themselves from your biological trajectory, as though to say: I am healthy, I can’t join you in illness and dying, so here’s how I choose to misinterpret what is happening to you to make myself feel a little better about this tragedy which you are imposing on me.

Remember, in the end, all organisms are selfish. From this proceeds everything else. There is no other sense to be made from obviously absurd propositions as “everything happens for a reason.” If that were a religious statement, it would at least have context; but it is astonishing how widespread this pseudo-belief and others like it are, well beyond those who identify as religious. Again, it’s just humane cognitive bias. Think of it as mental quarantine — you have dirtied their existence with ill health, and that is how they cope. In fairness it is also being polite, but to the person who knows they are terminal, it can only be an insult.

Nothing against you. I am on your side, and once actually punched someone for delivering that line. I’ll always remember an interview with Keanu Reeves in some magazine, who years ago lost his wife and unborn child in a motorcycle accident, saying, “People are always telling me, ‘Everything happens for a reason’ … That’s bullshit.” It’s rare to find a top Hollywood actor denying the universal American religion of cheap optimism ueber alles.

The mind is desperate to make sense where there is none. Desperate to posit meaning in a world independent of meaning. And you’ve compiled an amusing, and infuriating, list of ways idiots do that when confronted by mortality. They don’t pause to consider how they would feel hearing such words if they were the one dying. Because … organisms are selfish.

Though I must say, “perks” to dying early — that’s a new height of insolence. You should’ve tried punching that one.

Marshall, this is quite helpful. Knowing there is such a thing as optimism bias, and it contributes to evolution…very helpful. Sometimes a person who turns toward optimism can feel like a Pollyanna, especially in very stressful circumstances with uncertainty as an outcome. Also helpful, the reminder of what Keanu said. Thank you.

Thank you all for sharing your experiences. I have only just been diagnosed with Squamous Cell Carcinoma five days ago. The only people I have told are my husband (who, thank goodness, was home with me when I received the news), my boss, my HR manager, and one co-worker who is filling in for me while I’m recovering from surgery. I’m about to go have dinner with one of my closest friends and I decided to google how to tell your loved ones that you have cancer (lower-case c intentional). I think I will wait to tell her. She’s already had one close friend that passed away from cancer and, even though I’m told what I have is treatable, I don’t want to blurt it out to her just yet. I know she will take it hard.

Although my sister-in-law doesn’t know about my diagnosis she sent a long text out to family members this weekend about how her dog died and how she has to explain the concept of Heaven to her four year old daughter. Bad timing! When I spoke with my husband after he came home from work I told him I was really tempted to reply to the text and say sorry about your dog but I have cancer. My husband chuckled and said he was thinking the same thing.

I lost my mother 22 years ago to a Melanoma that started as a birthmark on her stomach but spread like wildfire inwards. I was 15 and she was 44 days shy of her 38th birthday. Now here I am, having been diagnosed 8 days before my 38th birthday. I read an article several years ago that Madonna always feared she would die the same age as her mother until she surpassed that age. Reading that made me feel comfortable with the fact that this was a normal thing that children who lose their parents early go through. I calculated 44 days before my 38th birthday to be Feb 19th. I marked that day off the calendar and I could throw out that way of thinking. Ironically, here I am.

I’m most worried about the “survivor” badge I will have after I “beat it”. I’ve always resented those phrases associated with cancer, along with the positive attitude thing. My mother had a positive attitude and that didn’t help her. I’m dealing with this with hard-core facts and from what I’ve read the odds seem to be in my favor. I love the gentleman’s stance above about being entitled to be cranky. I’m gonna use that.

Jamais, thank you for your comments. I also received the cancer diagnosis at the same age and the same breast as my Mom. I also am worried about the “survivor” badge and the “battle” mentality. Cancer is not going to be my identity for the rest of my life. I can barely contain my snarl when someone says “survivor.” I hope no one calls me that.

“there’s something odd about that..that she has breast cancer and she’s not better with chemo..I mean, c’mon, there’s cures for that these days.” (no words. No words at all.)

“it could be worse, it could be lung cancer” (huh..?)

“it could be worse, she could be dying” and then when I pointed out that she was, they said “she could have been hit by a bus”

“Yeah, well my MUM had a tumour and it could have been cancer!!” (further questioning revealed it was a tiny, benign tumour in her leg, and also, when did this become a competition?)

I was rather worried at one point because she took a turn for the worse (she pulled through it, but anyway) and I was telling a ‘friend’..then this ‘friend’ said, “so hang on, what kind of cancer is it again..?” so I said it was terminal breast cancer, and they replied with, “WHAT, so it’s just BREAST cancer?! You’re making a fuss over nothing!”

My God! This whole stigma attached to breast cancer, that it is an ‘easy cancer’, or ‘curable’ or that ‘no-one dies from it anymore’ is just so silly.

You are so right Lizzie. I’ve gotten comments similar to that too. Like “oh, well that’s just breast cancer, so it’s curable” or “is it a bad cancer” or “at least it’s not _____(fill in the blank) cancer”. I agree with many that people just don’t know what to say, but going to these extremes is simply ignorant and totally ignores the person and family who are suffering with cancer.

Not brave enough to venture a comment, not after this list.. I can only wonder what it must be like.

I really hope this does not come across as insensitive.. What does a guy say, really? I just found out that a friend’s mother has been diagnosed with stage IV cancer. I don’t know what to say to him, or her.

Since my 2012 diagnosis of kidney cancer (renal cell carcinoma), every “friend” I have (or had) has bailed on me and no longer has anything to do with me! My diagnosis was in late 2012, my kidney removal surgery was May 7, 2013, and I haven’t heard from anyone since June, 2013! I suppose in their minds, avoiding me like the plague is their idea of “helping” me! Some help! Not one visitor while in the hospital, not one visitor after being discharged. Ironically, the very people who bailed on me were the very first ones I told about my diagnosis. Or tried to tell, I should say. The instant I mentioned kidney removal, he and his wife interrupted, cut me off, and proceeded with “Oh well, so-and-so has only one kidney, and such-and-such has only one kidney, and yada yada has only one kidney, and blah blah has only one kidney, and what’s-his-name has only one kidney, and what’s-her-name has only one kidney, and on and on the “one kidney routine” went! With every name they mentioned, they were dismissing and trivializing my situation. News flash folks, I happen to be fully aware that there are people on earth with one kidney, so reminding me is not only unnecessary, it is very insulting! The really disturbing thing about everyone bailing on me is the fact that these are people I’ve known since high school, and I graduated high school in 1974! (So much for “a friend in need”!) As if that weren’t enough, this “friend” is notorious for bombarding you with advice, regardless of whether you want or need it! The very first piece of advice he unloaded on me was to “get all my affairs in order”! My particular type of cancer was caught early enough to not be life threatening, yet here this guy is already shoveling the dirt! In my book, telling a newly diagnosed cancer patient to get your affairs in order should be at the top of the list of what NOT to say!

My husband was cheating with my friend, he moved in with another woman. My husband that could not do without me now does not want to see me. i am so happy that I got my lovely husband back after i was scammed twice by fake spell caster but i thank God that Dr Mack helped bring back my husband without delay without any form of scam activities. contact this God sent spell caster on his email:DR_MACk@YAHOO. COM i promise he will help you SOLVE your relationship problem, his words are SURE!!!.

I have to put up with stuff everyday. I got GBM it’s a brain cancer. At first your story sounds so said, but I remember me. The heck with these people, I look forward, in gods grace, to see what most people will react to. Don’t fall into adolescent talk. Be proud.
patrick

Several months after I had been diagnosed with terminal cancer and given 5-7 years, my mother was diagnosed with throat cancer. She went through 6 months of chemo and radiation and has been cancer free for about 2 years. Every time we get on the subject of cancer, she tells me what a blessing cancer was for her because she lost so much weight. I lost weight too mom, at one point I was down to 78 lbs; WHAT A BLESSING!

I was diagnosed in July of 2008 with TNBC. I think people really are trying, but they get it all wrong. I feel that after being diagnosed myself, that even though a person says the absolute dumbest thing they possibly can, at least it was better then not being there, and not caring at all. I had a cousin email and she asked me if I was scared. I just wanted to yell. Yes I am!! I didn’t hear from her again until much later. Worst thing that was ever said to me was in a Michaels’ store. A lady looked at me (I had been on chemo for about 3 months at that point, and was wearing my wig) and said,”Wow, you look terrible. Do you have cancer or something?.” I replied,”Yes, I do, I have breast cancer stage III.” I said that line with all the pride and conviction I could muster. The look on her face was enough to satisfy me. I bought my items and proudly walked out of that store. Lisa, thank you so much for your blog.

My Mom had pancreatic cancer and after we told the family, we were inundated with positive people, negative Nellies and just rude people – case in point my formerly favourite cousin. When he was talking to her about the benefits of “juicing”, he actually told her “IF you get over this, you might want to try juicing.” And just in case she had thought it was accidental – he REPEATED it AGAIN as he left “If you get over this, then you’ll be able to paint and draw again.” I know that he wasn’t being deliberately rude – just a naturally negative person with diarrhea of the mouth.

Thank you for being so candid and honest with your feelings, complaints and private thoughts. I was recently diagnosed with BC (Er+ Er+) on 7 March 2014. I had a lumpectomy on 18 March. I’m not great with the new language or abbreviations, but I’ll give it my best try:

A 2.0 cm IDC was removed from my left breast along with a second “In Situ” detected by MRI prior to surgery. Pathology revealed clean margins (0.1 cm and 0.2 cm were the closest). My Sentinel Node was clean. Oncotype DX was 43.

I began chemotherapy (Taxotere and Cyclophoshamide) on 9 April. My second was on 30 April. Another is scheduled for 21 May. A 4th will be approximately 11 June.

I’m recovering from the 2nd therapy. My stomach, face and body are bloated. My head is bald, itches and I have sores on my scalp. I will have 7 weeks of radiation after chemotherapy, then a hysterectomy with my ovaries removed (late September). Somehow the old “clunkers” are still chugging along.

Lisa, I want you to know that I read your and April update. I read each post on the “What not to say” portion of your blog. Have to admit, I laughed. I laughed A LOT! Just yesterday the local manager of a Sally Beauty Supply asked if she could “look at my head” under my scarf. I mostly don’t even care. Mostly I hear things like, “My so and so had this and blah blah blah.” Some are hysterical and I wonder if I’ve ever said something so stupid. I probably have.

Lisa, I’m unable to find the right words to say or write to you or the others on this site. I wish you were near. I’d bring you brownies, offer you a hug, my ear… or whatever it might be, which would bring even the smallest rain drop of happiness to you.

Bless you, your children, husband, family and “sister’s” on this site and worldwide.

I’m not sure if this qualifies for your “stupid things people say” blog, but I believe it’s a story that needs to be shared. Many years ago we came to know this “lady” with a serious problem, almost as serious as cancer itself! This “lady” made a point of going around, telling everyone she met that she had leukemia and had only X amount of time to live. I mean she milked it for all it was worth! At one point she even went so far as to take a pair of scissors and cut out clumps of hair from her scalp! Problem is, when “chemo hair” falls out, it falls out root and all. Her roots were still there going strong, simply cut short! She had us all fooled, even her own mother, mind you! We were all worried sick and felt helpless. The greatest insult came when a friend contacted the “lady’s” doctor to see what we could do to help, and was informed she was not receiving chemo therapy and did not have leukemia! So, judging by her behavior and the doctor’s verification, we concluded that she was indeed sick, just not the kind of sickness that requires an oncologist! (If you know what I mean!) This took place over 30 years ago, and word has it that she is still playing her “leukemia game”, even to this day! Small wonder so many people turn their backs on those of us who really are sick! When someone “cries wolf” often enough, people will tend to not be there for the rest of us, even when we’re being devoured!

I have terminal lung cancer and because if my past I don’t have much support My family is mad because I want do treatment even if it might could give me a cpl extra months. I have a three year old little girl who is my life. And the treatments would take me away from her. Wich we have only been apart for about 3 days her entire life. My immune systems is really week because if the cancer and other health problems I have. So for me while I can still make myself do things I want to enjoy every bit of life I can with her and those that want to support me I hope I’m doing the right thing. And as far ass comments go. The one I hate the most is. Are you sure you don’t look or act sick.

Ron go for the treatment that makes the most sense to you, and it will be the right thing for you. Let go of anyone who is not there to support you and enjoy your daughter every chance you get. I was told 4 mos, made my choices and will be 2 years in Sept–it’s a lot of guess work—we have the same favorite comment–I now reply with my own random answers, sometimes I say that drooling is done every other hour and they missed it!–limping at 4pm ect…—some people get it- the true idiots just stare—so glad I’m only sick, can you imagine being that stupid with no hope?

Just had mastectomy and LD flap reconstruction for BC that recurred after 4 years. Chemo starting in 2 weeks. My classic comments include:
“Oh God! I’d DIE if I lost all my hair” (from a girlfriend who came perilously near losing her life at that moment)
“It’s a very straightforward operation and people have it all the time, it’s no big deal” (SIL to her brother – my partner – trying to convince him to go away with his family the week of my operation)
“She has lots of friends and family to support her – she doesn’t need you as well” (Same SIL, same context)
“Think of how much money you’ll save not having to go to the hairdressers!” (Do you actually KNOW how much it costs to live with cancer?)
“You are lucky you’ve always had small boobs – no one is going to notice” (Actually, I do)
“I’ve seen this fabulous website with loads of pictures of people with one breast and they look amazing” (Well guess what, I don’t)
” X had the same as you exactly but it was much worse for her because her chemo was concentrated in a shorter period”
“Saying you are not going to wear a wig or a scarf is just being bloody minded” (Probably. And your point is? )
“If I were you, I’d just go bald – wearing a wig or a scarf is more about stopping other people feeling embarrassed” (Hand me that scissors and we’ll find out shall we?)
“Just go for the bald look. You should make a STATEMENT. It’s all about positive attitude.”
“Lots of top models have their head shaved.” (Yeah, well I’m not a size 0, six-feet-tall, twenty year old supermodel with amazing bone structure)
“All those free treatments and therapies you get – I’m jealous, I wouldn’t mind getting cancer if I got all that lot” (You want to swap?)
“I’m surprised you’d bother with a reconstruction at your age” (Implication…it’s all about sexual attractiveness and you should be past that)
“But LD flap is such a big operation – I can’t believe you risked your health out of vanity”
“I must send you a link to……there is a really interesting article on breast cancer” (I’ve probably read it along with the other zillion sites I have researched since getting my diagnosis)
“I’ve got some amazing homeopathic cream made out of the pubic hair of a yak that you should rub on your scars” (Er – no. The surgeon has given strict instructions not to rub anything on them.) “No, this cream is fine, it’s totally natural. It won’t do any harm.”
“How come you got breast cancer after you breast fed 5 children?” (Shit happens.)

…and hundreds more I could bore you with but I guess you’ll have heard most of them!

Good blog. I have CLL and am tired of the barrage of stupid things people say. Firstly, my form of cancer is incurable and I am completely at peace with the timelines. Yet neighbours tell me not to give up…to battle this…etc, etc. They are the ones in need of therapy…death therapy as they are so afraid of death that they think we all should fight for every last breath. I know where I’m going, I’ve got all my affairs in order, I’ve done enough for 10 lifetimes and have nothing on my “bucket list.” So PLEASE would you let me live with my cancer free of guilt and platitudes. If you want to do something, stop donating to all those greedy cancer fundraisers that make huge salaries, drive big SUV’s and here we still pay for parking at the cancer centre.

I was diagnosed with breast cancer in February 14. I am 48 yrs old and it was a big surprise. A comment from a girlfriend will always stick in my brain…. “oh well these things happen for a reason”….. I know she didn’t mean anything by it, but that is honestly the most stupidest comment that I heard in my cancer journey.

Went to a funeral wake, complete stranger starts interrogating me on why I walk funny. I have ankylosing spondylitis. Classic question “oh I suppose you won’t be having children with that as it’s probably hereditary!” Jaw dropped no it is not!

I refused to speak with her after that. My husband came to us a little while later oblivious to it all and she started on him, at which point I said that I wasn’t comfortable talking about personal issues with her. She then pressed a religious pamphlet in my hand with the words “god heals”…

My husband had colon cancer, which was detected purely by accident and early. He sailed through five weeks of chemo and radiation. No rash. No vomiting. No pain. Didn’t gain or lose weight. Kept all his hair. After two weeks off, they operated on him, and found no sign of the cancer. The chemo and radiation had worked marvelously well. Unfortunately, he died nine days after his surgery, basically because he had a number of other health issues. The main comment that people made? “Oh, at least he’s not suffering anymore!” He didn’t suffer during his cancer, so this remark was stupid and senseless.

I am so very sorry for the loss of your husband. My sympathies go out to you.

I truly understand what you’re saying. I often find that people don’t know what to say, so they say something that doesn’t really mean much, except maybe an attempt to make you (and themselves) feel better about a very difficult situation.

I’m a cancer survivor (diagnosed late 2012), and I’ve heard all sorts of crazy comments. From a distance, I’ve been able to chalk them up to ignorance, but at the time, they were rather hurtful.

I am glad that we have a place like this to turn to and share the senseless, and often hurtful comments. Most every person who comes here understands what that’s like.

Thanks for posting this! An old friend just told me she’s fighting leukemia for the past three years and I was totally shocked. We’d been talking for a few months and she never let on what was going on with her.

I told her I believed in her and would be there for her in any way I could and then ran out of words… There were a few stupid cliches that I resisted saying, something like “having a good attitude.”

I did not say it because I don’t want to sound like I know it all when she’s the one going through hell.

Thank you for giving examples of what NOT to say and that attitude to avoid. Do you have any advice on how to go about being helpful to my friend?

People do say the stupidest things. While we were in India (where my husband chose to live out his remaining days–11.5 months, to be exact) his exwife called on his birthday. She asked him “What are you living for? Who are you living for? Why are you prolonging your pain?”. He was so shocked by these ‘existential questions’ that he made excuses for her, saying that she was the ‘only one brave enough to ask them’. Nobody close to him who really cared about him was bringing up those obvious questions because we knew the protocol. Meanwhile that one conversation put my beloved into a depression and downward spiral that until then we had been able to shield him from. He began to decline for six days…until finally his psychiatrist and I were able to pull him back up to where he needed to be. He ended up living many more months and creating a legacy of art work and became a model of positive thinking for all terminally ill patients. Keeping positive, keeping spirits up, are necessary in order to deal with the pain. It’s been proven that we feel cancer pain more if we have these negative thoughts. This is why it is SO IMPORTANT to be careful who we allow to interact with us or our loved ones who have cancer.

My husband was diagnosed with Stage IV stomach cancer and only 2-4 months to live. At the 4 month mark was his birthday and his exwife called him. She asked him “Why are you still living—what do you have to live for? Who are you living for? Why haven’t you let go yet?”.

After their conversation he immediately spiraled into a depression and 6 sleepless excruciating painful nights followed whereas nothing had changed except he was now thinking about dying instead of focusing on all he still had to live for. I was told by a psychiatrist that cancer patients or terminally ill patients will feel pain more intensely if they focus on negative thoughts like the ones his exwife brought up which is the reason you don’t bring it up—UNLESS the person with cancer INITIATES the discussion.

Luckily, Scott pulled out of that funk …in the bonus 7 months he lived beyond his birthday he created a legacy that included 200 watercolor paintings, a book of his art, and a documentary short was made by his oncologist that is being used in India to encourage cancer patients to live life to the fullest right up to the end. Often people do not think of the impact that their words will have on another human being. I guess that’s why you have many people who will avoid you when you have cancer because they are worried about saying the wrong thing….or then you have the people that say whatever comes to their mind without filtering it and without bothering to think about the consequences.

While I agree that most of these comments are insensitive and stupid. Maybe consider the person making the comment is also really terrified, does not know what to say, is clearly uneducated….I guess my point is they are often not made in ill will so a little understanding goes a long way. That’s all.

On the other side of this coin is what is the right thing to say? The best way, IMHO, to respond is to just ask “what can I do to help?” If asked to do something, please follow through. Many times caregivers/spouses don’t ask for help, but I have some loved ones who just see when something needs to be done and they just do it without even asking (yardwork, light housecleaning, transporting kids, etc.). Those are my angels.

I was diagnosed Dec. 3rd 2012. with TNBC and at the time my step daughter and I did not have the best relationship. She was coming up for Christmas and my husband thought it best she not come. Because of our busy schedule of getting multiple things set up fast for this cancer that was so fast spreading. Anyway…. She yelled and said I was faking cancer because I did not want her to come for Christmas…Boy what a nice beginning drama to start out… My dealing with so much and then this topped the cake…

So good to know I’m not the only one to have stupid things said to them. I have breast cancer and about to have a mastectomy and lymph nodes removed plus chemo. Here are some of comments I’ve had.
You don’t need your breasts anymore, so just tell the surgeon to cut them out.
I have friend who’s had a double mastectomy and she’s better than she ever was before.
It’s such a common disease now, you’ll be fine.
Having cancer is because of negative/repressed emotions.
I recently had a mammogram and was told I still have very young looking breasts.
Don’t worry you can have a reconstruction.
I have also heard many cancer stories, it’s like going on holidays, everyone has a horror/tragic travel story and of course they really think you want to hear it!!
To all take care and best wishes.

I was diagnosed with Triple Negative BC on 20th June this year (2014). Mostly people have been great, telling stories of people they know who had cancer but beat it. However, one gem from a very “militant” vegan (former) friend was that I shouldn’t do chemo (apart from surgery and rads, chemo is the ONLY treatment available for TNBC) cuz I’d be filling my body with poison and he’d be “very disappointed” if I decided to go ahead with it!! He also disagreed with surgery and said I just needed to change my diet and try “sun-gazing” – look it up ;o)
When I told my boss that the doctors said I shouldn’t work during chemo (which will be every 2 weeks), he said he had a friend who worked every day during chemo and had the attitude it wasn’t going to beat her and that some people have the attitude that they don’t want to get better….. ????!!!!

Hi Ros,
Some people has no idea!!!!
Your friend is an idiot and wonder how much sun gazing he would do, if it was him.
Good luck, do what you believe is best for you and I wish you the very best.
Cheers

Here is my friend’s comment of thirty years who went through testicular cancer at 29:
How would describe the experience so far? Naturally, none of it is pleasant.
But it truly is fascinating to go through the science. As I shared with you – I did try to embrace the science and the process and take interest in the workings of the medicine.Of course there were days when I was so sick and SO angry.

Frankly, the “embrace the science and the process” is offensive to me. I am carrying two unborn babies who may or may not survive this process. If they do survive, we do not know to what their physical or mental faculties will be like. We cannot even stage the cancer nor estimate a prognosis because we cannot do the normal scans and procedures one would do because of the pregnancy. And I have 14 rounds of chemo, surgery, and 35 rads left.

So please. Try to understand it’s not just about me with cancer. There are many, very scary unknowns, including two unborn and very wanted children involved.

Hi Kenzie,
It’s crap that people say the stupid things they do, but I think they just don’t know what to say and so all this rubbish comes out of their mouths. I also have had said same to me “if you’re going to get cancer breast cancer is the best one to get”!!!!!!!!!!!!!!
Yep loving it, having my breast removed, the pain, the unknown, finding out its also in my lymph nodes and the icing on the cake chemo and radio therapy.
I hate every minute of it and my life has turned upside down.
I wish your mum the best of luck. Take care Christine

I remember a nurse asking my mam (who was also a nurse) when she had her unsuccessful reconstruction done ” was it your husband who made you have this?”???! unbelievable…. I lost my beautiful mam in November and how angry I am at the comments “she’s in a better place” NO she’s not, she’s not with me so how could that be better?? “she has no pain now”, really?? how about a broken heart on top of everything oh and separation anxiety. “You got to say goodbye to her”, no I bloody didn’t, yes I had to tell her it was ok to let go as her poor body was tired. My heart is broken and keeps breaking every day. She was my best friend and the love of my life. “you have to get on with it”, i wish it was that easy. It’s funny how people drift away from you when you need them the most. I’ve found out who the important people are. 🙁

My friend found out recently that he got cancer, he calls me every day telling me the stupid things people have said:
“At least you’re young, that means you can fight it better.”
“Have you been told how long you have left?”
“I wouldn’t have chemo because I wouldn’t want to be bald.”
“Are you going to die?”
“I’d just kill myself if I found out I had cancer.”
When he told his girlfriend she said “If you die will I get your life insurance money?” He broke up with her after that.

[…] I got an email last evening from a woman who said she was from one of the more venerable online news sources, one that used to be in print. She said she was a senior editor who was “working on a piece about what you shouldn’t say to a breast cancer patient, and I was hoping you could lend your insight. If you’re open to it, could you send me your thoughts on what people shouldn’t say (and why), and some examples of what they could say that would be much better? Any anecdotes or advice would be terrific, and I would love to include your thoughts.” It immediately occurred to me that one of the things you shouldn’t say to a breast cancer patient was that you’d like her to tell you what you shouldn’t say to a breast cancer patient. I emailed her back, thanked her for asking me, but suggested to her that “this topic has been done to death. If you Google ‘what not to say to breast cancer patients,’ you’ll see what I mean.” I provided a link to a post by another blogger, who has metastatic breast cancer, who’s written what I think is pretty much the last word on the subject: Stupid things people say to those with cancer & their families. […]

Hi;
My husband Dave has stage 4 metastic prostate cancer. His diagnosis was last May I have had someone ask me what I plan on doing with our HOUSE. When he is gone how are you going to be able to care and afford it by yourself? This question was posed to me in June. Another thing with mens cancer is people think its so curable and they assume stage 4 is. I am always asked why Dave has cancer when there is screening to prevent it. In Daves case he had a complete physical, but unfortunately the nurse practitioner didn’t do a dre or check the box for psa testing.She told him he was to young to worry prostate cancer (57) plus he LOOKED HEALTHY! Psa blood work is unrealiable and had to many false positives and negatives. The following year he was symptamatic but there was nothing done yet again , and that is how you end up with stage 4 prostate cancer I have been told that I should cheer up! I have found all the so called friends who say they are there for you really are not. The ones who are stead fast and true are the ones who don’t ask what they can do they just show up and help . Only another person who lives with a spouse at this stage of cancer would ever understand the emotion and Stress of day to day living.There is nothing on earth that could ever prepare you for the life changer of cancer. Dave was not the only one with diagnosis it is my fate in life as well. So to all the so called friends , to all the stupid comments there is nothing that suprises me any more!

You’re right there is nothing that can prepare anyone for cancer. Its like being dropped onto another planet. It has changed my life and also I’ve found that some friends are not friends at all and others are amazing. Some people should just keep their mouths shut!! I wish you all the best. Take care. X
Christine

If anyone tells you you’re on a CANCER JOURNEY, you could tell them you planned to go to GERMANY, JAMAICA, or THE BAHAMAS, but you somehow ended up in IRAN or NORTH KOREA, for the cancer experience did seem to be that way in some respects.

April this year I was told I have stage 3b cervical cancer attached to my pelvic bone was told I had a 20% chance to live 3 years the Dr asked me three times if I knew what he said sheeh that ones not as bad as people telling I know how you feel keep in mind none of them have ever had cancer

I stumbled across this blog and it brought back so many memories of my own breast cancer journey. The stupid things people said were so astounding to me that I started to write them down. After each stupid comment, in parentheses, is the response that I wanted to say but I kept my mouth shut instead and had faith that people weren’t intentially trying to be hurtful.

“Well, we all have to die some way.” (True, but I’m not going to die from breast cancer. If it’s possible to die from stupidity, you’re in trouble.)

Asked by a man: “Will you still be able to tell when you’re cold?” (You will never find out, will you?)

“Better you than me because everyone in my family dies from that.” (Thanks for the concern.)

“Are you going to get a D cup on the reconstructed side so you’re lopsided?” (Why do you think cancer is funny?)

“Having a bilateral mastectomy for breast cancer is just like having breast implants and a lot of women have those.” (Educate yourself. Please. Before you make a bigger fool of yourself.)

“I’ve heard having a bilateral mastectomy is really painful. Why do you want to do that?” (Gee, I just thought it would be a fun thing to do this summer. Do you think that dying from breast cancer would be less painful?)

“I’m more concerned about my mom’s friend who has breast cancer than you because she has kids and you don’t.” (You’re right. I’m inconsequential.)

“Didn’t Angelina Jolie have a bilateral mastectomy? Then it must not be a big deal.” (I thought Angelina Jolie’s bilateral mastectomy made the news because it was a big deal. Silly me.)

This just reinforced my decision to not tell anyone (except my wife and brothers who are distant). I expect the response would be much more unpleasant than when I told a few friends about my fathers death – no cards, a comment more propitiate to my dog dying, a donation to her favorite charity. With friend like that …

Hi Bob – I just wanted to say how sorry I am to hear of what you’re going through, to hear about your father’s death and what you have to put up with from other people. I’m in my 30’s and have an illness that means I have been bedbound for years. I know I’m lucky in many ways and am thankful for that, but it has really opened my eyes to the way that other people deal with friends with illness – it’s given me a tiny inkling of what folk with cancer have to go through. I’m not well enough to have visitors now – this has gradually become the case over the last few years, but what I wasn’t expecting was that none of my “friends” would want to keep up an email friendship. They have either stopped contact altogether, or they email once a year and say “Hi! How are you? What have you been up to and where are you working/living now?”. So I email back and patiently explain (again) that I am not able to work and am in fact in a worse state than the last time they emailed me with these same questions (obviously I put it more politely than that!). Then there will be no contact for another year, then they will email with exactly the same questions again! I can’t understand why people can’t even email back to say a simple “sorry to hear that”. I can’t pretend to know what it’s like to have cancer, but the inane things people say (or the total lack of contact altogether) must be even more hurtful than what I’ve experienced. Reading your post, Bob, made me feel quite furious. How hard would it have been for someone to send you a card when your dad died? I can understand why you didn’t want to tell many people about your diagnosis. Anyway, I wanted you to know that I am thinking of you xx

This blog is great; I went looking for something because my sister just told me (on the phone; we live a few states apart) that she has breast cancer, and I felt I did not say the right things. Reading these posts, I feel better, since I mainly said, “Oh [sister’s name], I’m so sorry!” and “I’m so sorry you are going through this right now” and “is there anything I can do to help?” but then I also blathered about how I hoped she would just have to have a lumpectomy, which is just one possible option for her right now, but even if she did have to have a mastectomy, “it’s just a boob” (yes, I actually said this), which I realize sounded awful, so I followed it up with talking about how my having had such small breasts all my life would make a mastectomy less traumatic than for someone curvy like my sister is… oh dear. I was hearing myself talk and had no control over it. But I was trying to… I guess I was not actually trying to do anything; I was just expressing thoughts, which were not helpful, I’m sure. The idea was, yes, it involves a breast, but if one has to lose it (AND have reconstructive surgery, we had already discussed), it’s do-able to get rid of the cancer as best as possible. But I feel I really took a wrong turn in that line of thought, without meaning to. Anyway, wanted to share, because I feel terrible, and wonder if anyone else has said a similar thing and/or if this is a horrible thing to have said. I tried to tie it all up with “I love you hugely and we are here, and let me know what you find out” at the upcoming MRI appointment… Thanks for any comments.

Daphne, my advice to you is what I tell everyone in similar circumstances and what I practice myself: if you regret something you have said, apologize. It is easy to either call or text and just say, “you know, I was thinking about our chat and I think I might have said something that could have been better. I am sorry that I said X but I hope you will focus on the other things I said instead. I am sorry if I upset you.”
Maybe she didn’t mind what you said and in that case she will think you are being extra thoughtful. If she did, your words will be so appreciated and then you won’t have to focus on that one thing you regret saying.
I hope this helps… It sounds like you will be a great support for her and the fact that you want to “do better” and be there for her and say helpful things proves it.

This is from one of my sisters today… I think it was supposed to be funny? This was after the lecture about how I should join a yoga class or do something to deal with “my problems”.

“At least you’re not dead.”

(I’ve just completed treatment for my second TNBC and have just found out from a bone scan that I have “significant degeneration” in my C6&7 neck joints and a compressed spinal cord that will need an operation or I could/will become paralysed!)

So sad to hear your news Barbara and I want to send you love and healing.
You’ve had some pretty awful news and I wish you all the best – all I can say is you will probably recover, but will your sister recover from the obvious problem she has with her mouth!!!!
Take care and many good wishes. XX

When I had cancer, I was glad that people showed some interest…and yes, there were some awkward questions. But people cared, and I didn’t mind what they said, not really. The problem is when people ignore you because they don’t know what to say. But finally, someone said something that still gets me. I had a very nice picture of me with my bald head, it looked rather glamorous/artistic I thought, so I emailed it to some friends. “Are you all right??” gasped my friend in a loud whisper when she phoned. She said her child accidentally saw the picture and my friend was horrified and had to hide it… Good grief. I haven’t talked to her since.

Someone very close to me told me Your negativity and victim mentality have become too much and I need to set boundaries. I don’t see the person I used to know but rather someone who I think has a severe addiction to pills or is dealing with a mental condition. It’s not the cancer or the drugs that you were given for cancer. That’s just an excuse to me . Be mad if you want I just want you the way you were before cancer. I was shocked by this message and who it came from, I was treated for advanced prostate cancer with Lupron and Radiation. Finished treatment in April of 2012. I’ve been shocked by how many close friends and family told me after treatment was over (well your done with that now, it’s time to move on ) they have know idea what comes after treatment!

Wow Gary, I’m so sorry that you had to hear that. I know what you mean though. I found that once I was done with treatments, everyone thought I’d be back to normal, but it just doesn’t work that way. At least not for me. I finished treatments in Decmeber last year, and near the end of that, I couldn’t sleep, and was very depressed. I’m very thankful for the medications that have helped me with both of those. I don’t think we’re ever the same after going through so much. Take good care, Helen

I have a chronic incurable disease. I take a weekly injection in the hopes that it delays progression and xdoesn’t cause side effects. When it does I have medicine for that. Who thinks they are EVER going to be in a position to deal with this. Then when I have break through disease I have to worry that it’s progressing. Usually not though. Next it’s time to party down with 1G of solumedrol x3 days. Party on Wayne. No party insight. Then it turns into what to take for sleep, then to wake up oh and to treat their side effects. And then we are into three months down the rabbit whole all while working. Nothing stressful about that. And hmmm those friends you mention. When things are chronic they begin to get bored. How can I help? Can you clean my kitchen over the weekend? It’s the monsters or me that need to move. Oh sorry I’m out of town. Hey no worries I get it how about next weekend. Oh sorry the dog ate my homework and on and on. The upside is people have stopped the I will pray for you or juice causes disease dujour cure nonsense! So this is something. I’m bummed why this blog exists, but it’s good to vent honestly.

My best friend has had several rough bouts of cancer, and is currently relapsing. We are both seniors in high school. This blog reaffirms my understanding that no-one truly needs the half-assed, insincere, statements of “good intent”, but… what should I say to her. I want to be there for her, but other than physically just showing up what can I do? I really worry that I am turning into just another person who fails to understand what she’s going through; and I hate it. She is always there for me, how can I do the same?

What a good friend you are. Tell her what you said here. That you will be there for her. That you want to help her in the ways she needs even if what that is changes. Ask what she needs now. Reach out to her often.

You don’t need to know what she is going through to be a good friend. Being a good listener and companion Are things we appreciate so much. Whenever you wonder if what you are doing is “right” or “enough” just ask her. Being honest and loving in asking for guidance is true help in my opinion.

I really appreciate this blog, and I apologize for my naive ignorance and anything I have said in the past. I hope that more people discover this amazing website. Additionally, you all are masters of patience; thank you so much for sharing your stories!

I forgot to add the popular “they’re discovering new things every day”one. Not likely after 6 years of glioblastoma multiforme, grade 4, and 3 brain surgeries. She claimed she’d looked it up. Median survival rate is often listed as around 15 mos.

I’m not angry at most of the people. Discovering that he’d been put on a Prayer Chain really upset my husband after his first surgery. I had to talk to him and tell him they meant well.

Hello, I´m 20 and I´m at college. I live in South America. In a week i´m going to get surgery to get my thyroid removed because of cancer.
Only my best friend and my close family know why I´m getting surgery.
Other people think that is only to remove a nodule, so obviously I got a lot of “funny” comments about it.
The first comment was from a “friend” that told me how good I looked after surgery, and that I not even had a scar on my neck.(I haven´t had the surgery yet 🙂
Then, a friend of my mother told her that her tarotist(?) had told her that i didn´t had “THAT” so now my mother thinks that my doctor is lying.(It is not a joke) but she insists that I should get surgery anyway, I suppose It´s a mechanism of self-defence or sth like that for her.
My uncle told me that If I was so unfortunate as to die, I should try not to die on sunday, because it was very difficult to arrange the funeral and everything.(It was a joke but not a very funny one)
Finally, the part of my family who does not know the whole story, wants to travel with us the day I´m having surgery(It is not in my hometown) even though I have asked them expressly not to.(The last thing I need is to have A LOT OF PEOPLE AROUND ME! and it seems they took it as a little trip to enjoy themselves)
People can be very cruel, so I decided to tell only those I know the best.
Your blog is really good. It really helps to write these things here. Thank you.

I have stage 3 breast cancer. I am going on my second chemo treatment next week. I am about to lose my hair. My boyfriend lost his temper the other day and we got into a fight. we fought so bad that I started to bleed very bad. It is not good to fight with someone with cancer. My port could have burst and you could bleed to death. Please be kind and patient when you are caring for a cancer patient. If you can’t than just walk away and don’t aggravate them . We have enough on our plate.

Thank you so much for posting this. I experienced many of the comments listed above when I was battling cancer.

Here is another crazy one that hurt me the most: The back story of the comment is that my mom was diagnosed with Stage 4 breast cancer almost one year to the date when I started getting sick. My dad and I were the only two people who were taking care of my mom at the time (I am the oldest of four and i recently graduated with my undergrad so it made sense for me to take care of my mom). I started becoming very ill and I contributed it to the stress and worry about my mother. But then I started running high fevers every night… then my blood counts dropped which required 2 units a blood a week! After months of testing, I was diagnosed with a sarcoma growing through my back.

Two days after I found out that I had cancer my Aunt— my mom’s sister, who lives states away, who never visited or helped with my mother, called me and said…
“Stop it… You are just faking sick to get attention…. Quit stressing out your mom… you’re going to kill her!”

A week after that, I was in the hospital with a 104 degree temp getting blood transfusions for a hemoglobin of 5.0….
My Uncle— my mom’s brother, who lives states away but did visit mom a little and at least tried to help at times, called me in the hospital and said…
“Knock it off! You’re stressing out your mom.”

My mom did pass away and those words still resonate in my mind. I know that what they said was mean, inappropriate and rude but I feel guilty about stressing my mom out when she was dying of cancer.

After the wide resection of my primary tumor and 8 rounds of chemotherapy, I was lucky to go into remission. I do have end stage renal failure because of all of this. I was on dialysis, then i received a kidney transplant from one of my younger brothers. But, currently I’m having symptoms of recurring disease so I’m in the process of testing again. Hopefully everything will be fine but I’m dreading what people, even my own family, will say to me.

My daughter has Hodgkin s Lymphoma. I cant tell you how many times people have said,”but that’s the good cancer”. Id like to slap them all. She was in remission for one month and found lumps in her neck. It had spread and she was then stage 3. She has since had a stem cell transplant and we are waiting for her first pet scan following. its this Friday. But I think the most annoying of all is when they try to give us a natural cure and insist that if we listen to them she will be cured without all the poison. Seriously angers me

A very close family member is very concerned. But who are they concerned about?

Shes concerned about my younger daughter who she feels will be emotionally damaged and face a lifetime of depressive disorders at having me being inconsiderate enough to have breast cancer. I was told this little gem two days prior to surgery.

Later on I got my results: chemo, radio therapy and hormones are recommended as apparently I have a 37% chance of remission.

As I wait for more appoinments with doctords, again they helpfully reminded of the destructive nature of this on my younger daughter. Shes in her 20s.

Then I found out that my parents who live overseas and are elderly are being shielded from this unfortunate news and when I tried to phone them for Christmas I was unable to get through only getting an answer service.

After days of this while recovering from surgery I was told they are too frail to know I have cancer so they are to be kept in the dark. At the end of an argument it seems they feel I am not entitled to tell them and I cannot get through.

Another family member told me not to burden this family member with too much information as they would get upset. They also are very frail apparently which again I am not so it seems in their minds.

I was upset at this and sent a message saying it upset me and that my prognosis at this point was that I had a 1 in 3 chance of dying from this.

I did not tell them more details such as in my case hormones are not proven to work. Also I need an expensive test that I cannot afford to see if chemo will be effective.

Luckily the daughter they are so concerned about has been a real trooper.

I was trying to recollect if I have been asked at any stage how I am coping and suchlike.

Hello! I had bi-lateral breast cancer. And let me tell you, people can be so rude! Here are 3 comments someone made to me. I was so mad, I could have slapped them.
#1.. Was said by my sister. ~~~ Well what about me?” My response to her was ” What about you?” ” Are you the one that was DX’d with cancer?” “IF and WHEN you are DX’d with cancer, then it will be about you! ”

#2~~~ I Was told this by a good friend. … I can’t come visit, because I can’t handle this.

#3…… This was also said to me . ” Oh my boyfiend said this will be the last time we see Dee, with her real boobs. My response to this person was… You nor your boyfriend have any class. You two deserve each other!

My sister was so distraught about my diagnosis she actually posted about it on Facebook and tagged me. I was horrified! She was upset and looking for sympathy for herself. I had only just told my immediate family and was still getting my head around it. I was very vocal about my desire to roll out the news slowly, in my own time.

My uncle, cousins, friends, acquaintances and people that I worked with got to find out about my diagnosis not from me, but on a Facebook post.

Once I spotted it I called her and demanded she delete the post. She seemed baffled as to why I might be upset about it. She took it all very casually. I even think she was annoyed at me for asking her to take it down. She didn’t succeed in removing the post for over 24 hours.

I was so upset with her for such a long time. The extra stress was the last thing I needed at the time. Every one of my family and friends knew what she did was completely inappropriate, but she never apologized. She said “the post wasn’t about you. I was really upset and I needed support to deal with your diagnosis.” Seriously! How messed up is that?

I am 45 mother and have a rare form of liver cancer. it was ‘totally random’ and i didnt ‘do’ anything to make this happen. I’ve had so many people tell me to be strong, positive and that these emotions will somehow make my cancer disappear. the 2 worst things I’ve been told( and more than once) is that.. I have love in my heart/ love all around me so therefore will get better and my most hated..that this will be GOOD for my 10 and 12 year old because they will become stronger and better people as a result of watching thier mother go through surgery and chemo.

My mum passed away last September after being paralysed after breast mets spread and cut out through the spinal cord in December 2013. I fully understand your frustration at the words you have heard and similar words. A lady who used to visit mum used to constantly say I KNOW YOU WILL GET BETTER and START WALKING AGAIN. I used to want to cry out loud each time she said these words and similar words since she had no idea what we were going through. Even I would have loved to have my mum walking and around but no science could guarantee this. Eventually the cancer spread to her liver and she started chemo (which I feared so much) on the afternoon of session 3 of chemo she passed away. I was not even around and flew back to know she passed away 15 min before I landed. I am still crushed by all this and at times feel I am getting worse and not better. Whenever I see this lady I just feel like shouting in her face and tell her how much emotional damage her words did and are still doing.

The worst thing ever said to me was when someone claimed to know what it was like to have cancer because they knew somebody or had a family member that had it. I’m sorry but if you’ve never had cancer then you do NOT know what it’s like and it’s down right insulting , hurtful, disrespectful and ignorant, to say that to someone that has. I personally have lost my Mother, my grandmother and two Aunts to cancer and I still had no clue until I went through it myself.

It’s so interesting to hear these stories. I hope I haven’t said stupid things. In difficult times I often feel it’s best to say little and just listen.

In October mum mum was diagnosed with very early stage breast cancer. She has had two ops and finishing radiotherapy soon. Her care has been brilliant, thankfully, so far.

At the time of initial diagnosis I contacted a friend who’s mum recovered from breast cancer a few years ago, as I thought she would be good to talk to. She was but she also told another friend who lost her mum to breast cancer 8 years ago.

This other friend kept asking me what the prognosis was, at this time we didn’t know. She then insisted that I call to tell her when I know, and what treatment she will have, and all the details. When we meet up she wants me to talk about it. I tried to change conversations, but she didn’t want me to.

Now I didn’t mention my mum to this particular friend initially as I worried it would open a can of worms for her because of her mum. So I appreciate it must be hard for her, but I hate it when people say to you “you MUST call me when you know the results”. Errrr like you knowing now is more important than us digesting the news ourselves.

Just before Christmas a best friend of mine since we were 8 was diagnosed a very very large tumour. I hope I haven’t said anything stupid to her. She sends text messages when she can cope with the news herself. I text back saying I’m here if she needs to talk.

We have talked and met up, at first diagnosis we got totally drunk together which I think we both needed. And with her family recently. I know what days she will be going in for tests and more results. When I don’t hear anything I know it’s not good news. I can’t even imagine what my friend, her mum and siblings are going through.

I am set to start chemo this week for my breast cancer. The biggest “button” I have is when people who know I’m starting chemo tell me how pretty my extremely long hair is. “Thanks. It’s falling out in two weeks. I’m so glad you’ve reminded me that I won’t have my trademark locks for at least 3 and a half more years, assuming it grows back at all.”

I’ve also heard some version of almost every one listed above, my other favorite being the whole “natural healing and start now making changes so that this doesn’t happen again.” Yeah, thanks for letting me know that I should cut out eating bread and only use coconut oil for sunscreen. That is most definitely why I got Cancer. That and my “dis ease” with my body. Because there is no such thing as disease. I kid you not. Someone told me that diseases are not a real thing.

Hi Reboca,
I wish you the best in this difficult journey. I am to have my last chemo this week and then 5 weeks of radiation therapy, so I feel like there is a light at the end of the tunnel. People say some pretty silly things, but mostly I think they don’t realise how it feels, after all unless you walk in someone elses shoes….. I had a very good friend tell me also that my cancer was caused by my negative emotions!!! Don’t listen to the crap and take care. X

My sister is dying of cancer. She has been openly hostile to those who made comments that she took as offensive, including mine. I have opened my mouth and stuck in my foot more than once. People say awkward things in awkward situations. Just because you have cancer doesn’t give you the right to judge people who are likely just searching to make conversation and attempting to put a positive spin on a very, very bad situation or supplying information that they believe might be helpful.
When there is an elephant sitting in the middle of the room with cancer written across his forehead, people tend to chatter out of nervousness. I choose to think that the majority of people are not intending to be hurtful or offensive in their comments.

Good for your sister. Thankfully i have recovered but I too tolerate much less bull shit. Some comments may have been meant well but many that I received were motivated by greed or a desire to blame me for having BC . Perhaps when you have walked a mile in your sister’s mocassins, you will understand.

My wife is currently going through Chemo. Her sister living in another stated wanted to visit and help her. I was very hesitant but since my wife wanted to be with her sister I was ok with it. Her sister visited her for 2 weeks. We had good time and she cooked food my wife enjoyed. But now that she is back has been telling other family members that she did a lot of cooking for my wife and spent enormous time in the kitchen, which is not true. I never invited her nor asked for any help. This makes me very uncomfortable and even mad. Helping someone is one thing, broadcasting others that you helped is another thing. I will never tell others when I help anyone, some thing I learnt from my parents. Chemo has just started and my wife has several cycles to go. Don’t know how to react! I am speechless,

I don’t blame people for not knowing what to say about non-curable cancer, they just want to at least say something they think is positive.
What I do not like is when you hear, “So-and-So lost his long battle with cancer”.
We are not bravely fighting a battle, we are ordinary people with a dangerous illness surviving each day not necessarily because we are courageous but because we have no choice otherwise.
The, “Battle”, if any, is for a personal resignation and peace with your own departure.

Thank you for sharing this. I have a friend who was just diagnosed with grade 4 malignant astrocytoma. My first words to her news was that she was the toughest chick I knew so cancer better be prepared to have its butt kicked. Then I slapped myself mentally because she has probably heard similar things over and over again. I really appreciate all of the people who have been through this and their insight. The big C word is scary and people have no idea how to react to it!!

I was diagnosed with breast cancer in Oct. I am now being treated with chemo and later radiation. I had a suppose friend tell me today that chemo makes cancer mad. What am I suppose to do to save my life nothing. I think I will do what the Drs. say.

It is a moment of truth.
Found out some family members cared more about themselves and not feeling uncomfortable about the fact that I had cancer than they did about me.
or my young kids or my husband who were all going thru this too.
Totally abandoned, by my parents, brother and sister.
I tried to make excuses for them thru it all, but I cant anymore.
As bad as the words have been, the actions were worse.
Love is a verb.
treated like a leper.
afraid to catch my bad luck?
this is how to make a person feel unloved.
Like the cancer made them unlovable-like a monster.

My heart and love really goes out to you. It’s not you It’s them. It should be different, my experience was it was horrible how my husband and I both were treated. Maybe it’s fear, theirs. Maybe it’s mortality issues. Maybe it’s even a whole lot uglier. But it is not you. Even my husband punished me for him being sick. Like it was my fault I wasn’t the one who was sick. No, I was the one. The only one who cared for him day and night by myself, because it wasn’t his children’s or his family’s problem. We did not have children together. I took care of him at home for 10 years until I died from exhaustion. The doctors told me I went to sleep and just quit breathing. The doctors said I was DOA at the hospital. When I came to in ICU, the doctors told me they called my husband, quess what he said, “Not my problem.” He abandoned me and is now living with his cousin who he gave a POA to and she wants my pension check, because I have to support my sick husband. Didn’t work out like they planned. Worked out great for me though. Single, happy, healthy, oh yeah, not dead. Point of memory lane here? Some of these people we should never ever be around. Gene polls are strange places to swim. You sound like a very loveable person. You nor anyone should put up with abuse. You know what would really rock their boat the worst? Love you. Not them. You’re the one whose worth it. So do it. Stop giving them the power and the permission to hurt you. Do what makes you happy. Give yourself permission to be happy. If you are waiting on someone else to make you happy…you’re always going to be waiting. People can and should be happy together, but some people will purposely disengage and put their gratification before another’s persons basic needs. That is defined as Physical Abuse by the AMA, and it is a felony, legally and morally. Peace Doll. Hope you Rock the Day. Hopefully there was something in this novel u found helpful.

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I am Usman – 4th stage Hodgkin’s lymphoma survivor (still have cancer but didn’t die even though doctors gave up long ago).

I’ve heard some bad shit like, “but you look perfectly fine” and “you should die so you’re out of pain” and “oh doctors do not know anything, they said a year ago that you just have a week” and “how have you managed to pay for your treatment”, etc.

The reality is that a cancer patient is actually in an agony and we’re extra sensitive – people should just shut the fuck up and if they can’t help us, they should just leave us alone…

A comment that really irritated me was “It’s great they caught it EARLY. I’m sure you’ll be fine!” — this was a comment I heard frequently from acquaintances, coworkers, etc., who simply heard that I had breast cancer and assumed it was caught early.
I was diagnosed with stage III triple negative breast cancer that had metastasized to two lymph nodes. I didn’t have Health insurance for four years prior (the economy was very bad at the time, and I was struggling to pay bills), so it made me feel bad every time I heard “at least they caught it early!”

Another annoying comment was “my aunt/cousin/2nd cousin/neighbor/friend of a friend, etc., had breast cancer and she’s just fine now! I’m sure you will be too.” Now that’s a nice thought, however when I asked any of these people what type of breast cancer their aunt/cousin/neighbor, etc. had, they would say “I don’t know.” Or “you mean there’s more than one kind?” When I asked what stage cancer that person had they would say “What stage? I don’t know.” They were assuming it’s one-size-fits-all.

I heard the later stages could turn out to be the “AIDS of Breast Cancer” if you’re lucky in the sense that both were chronic and interminable conditions (since there are now antiviral drugs for HIV / AIDS) and you’d end up having to see BOTH your regular doctor and “cancer doctor” for the rest of your life.

I found this post by looking for a forum to help me deal with my sister who is stage lv cancer and now living with me. The people I talk to all want to tell me storys of people they knew or know. Drives me insane ! I’m sorry to those of you that have to deal with off the wall comments.

Here’s one I love, said by my fiance none the less, made me feel terrible, like less of a person not the strong person I am used to being known as……..” So and so at this gas station had chemo, and she is just always so chipper. Can’t imagine how you’d be in that situation” like I’m too much of a pussy now, so how could I even measure up? Everyone’s condition is different, and at work I fake chipper as well! At home I should be able to confide in you how bad it really is. At work we all brush off even the most crappy days and put on the fake smile. Just because she seems chipper does not mean she is ok, or doesn’t hurt every moment. You are not there with this person at home, you have no idea what its really like for her. Also, thanks for making my illness seem so meaningless to you, as if me not feeling well is an inconvenience to you because I am not CHIPPER ENOUGH FOR YOU! hurtful indeed. Or my boss who says well at least you can still work. Yeah you have no idea my fight every day. How much pain I push back to stay face and be here. Thanks to all the insensitive people!

Wanted to add, I am not angry at the people who try and say things like stay positive or strong. Some people just don’t know how to respond to someone with a serious condition. Yes in most cases you would think people would stop and think before saying something, but we have all put our foot in our mouths. This is why I do not talk in depth about my illness to many. I answer vaguely, and try to understand their response. Its the insensitive comments that get to me. The ones where they think you are faking, or comparing you to others with a different illness. Sometimes people don’t think, others they are just lacking the ability to be empathetic. Glad to find a page to vent lol

My experience was with a spouse who had Parkensons and Dementia, so, please don’t shoot me for sharing on this site, but 99 percent of what these a holes are saying, they’re saying to all people with serious life threatening illnesses and to our Wounded Warriors s well. They are the really diseased people. And there is NO cure for them, ever. Maybe we’ll get lucky and they will be caregivers to someone just like them, Karma has a way. Much love, Grace and peace to all.

I hear dumb comments too. I’m just about to finish radiation for breast cancer. I told an acquaintance and she started telling me about her sister in law having a more advanced stage of breast cancer. She added that most people with breast cancer get brain cancer. WTF! I was too dumbfounded to comment. It reminds me of when my child was born with a genetic kidney disease. Two, yes two, coworkers asked if he was sick because I took antibiotics when I had a sinus infection during pregnancy.

Plus, don’t forget the ones that don’t understand the difference between radiation and chemotherapy. One person asked if I would lose my hair. When I replied no because it was radiation, not chemotherapy she replied “What’s the difference? They’re the same thing.”

I sure understand this. I’ve had a lot of things said to me including its all in your head , I have incurable cervical cancer. Also radiation does cause hair to fall out in some people just little bits I lost some of mine

I just got my mammogram yesterday and am getting a breast biopsy Tuesday. I’ve had cervical cancer. My boyfriend of two years knows this. I am terrified, I know I don’t know yet but the unknown is scary and after just finding out about the biopsy my boyfriend says, you are gonna be fine. When I was still crying an hour later her told me to quit whining and that he wasn’t going to put up with a feel sorry for me attitude. I’m floored. I feel like I can’t count on him to be supportive. I’m still scared, he hasn’t hugged me or anything since then. Is this what people are like when they don’t know how to respond?

Hi Andrea,
Good luck with the biopsy. Sadly I think your boyfriend is also terrified and doesn’t know how to respond. Unfortunately that doesn’t help you and I know how alone that can make you feel. Maybe you could talk to him and explain how you feel and ask how he feels about it. I wish you the best and know that there are lots of people who do understand. Take care. Christine

Everyone is different, but I found that basically telling my grandma (non-hodg lymphoma, for the record) that she would get through it “no problem”, almost non-chalantly (though not quite), comforted her. My confidence gave her confidence, at least in that moment.

Often times it’s not what people say to us that rubs us the wrong way, but how they say it. For example, time and time again we find ourselves sharing medical information with someone, only to regret it soon afterward. With some people, the way you’re treated before and after confiding in them is as different as night and day. This can apply to anyone with any medical condition. Before they learn of your condition, you’re treated as normally as anyone else. But, once you let the cat out of the bag, they begin talking down to you, patronizing you, treating you as if you were a four-year-old. In their book, it’s as if they’re implying that having a medical condition automatically makes you retarded! Cancer patients, heart patients, stroke patients, epileptics, you name the disorder, and you’ll find victims of this mistreatment. I would just like to know, in what universe would baby talking you be considered “helping”? Isn’t it enough that we are forced to carry the load of our own medical condition? Must we also shoulder the burden of the world’s stupidity? News flash people: We are still the same people were before! Why you suddenly feel the need to start treating us differently is absolutely ridiculous. Makes me believe while we are the ones with the diagnosis, they are the ones with the “disease”!!!

I’m working through thyroid cancer. Due to complications, I ended up with two surgeries in a short time. I had to keep my neck covered and when I took the cover off, I had several people ask what happened. This is a small scar in comparison with a lot. I got so tired of the constant bombarding and insensitive comments, that I ended up tell people my throat got slit open in a fight. They don’t know the fight is cancer but it sure shuts them up.

I found that prior and just after surgery (major organ removal) so many people asked if they could do anything to help, I thought this was so great and supportive of them…. however, when this was called on for the most simple of tasks, the excuses were too funny. Even just asking to come over for a chat. Why even offer if you dont mean it. In a way this sorts out the fake friends and family in your life. Unfortunately as time goes on, you will be more alert to fake behaviour and attitudes. I just hope that none of them end up with C, as I wont be able to hold back and dish out a bit of same offerings and then go on to explain how they didnt bother with that, so just suck it up.

Here’s another good one to add to the list: “You don’t look sick so I think you are just doing this for attention; I don’t believe you have cancer.”

My husband has had chronic illness for about 20 years. Heart problems, and now, as of a year ago, kidney cancer, stage IV. When he was at his worst with the heart stuff, our daughter separated from him and threw herself into a relationship. Now, that he has cancer, she suddenly announced she is marrying a new guy we know to be manipulating her, and went further to say that the guy had helped her to see that my husband is really just faking everything. She’s never asked about test results, attended a doctor meeting or made any effort to understand. That one hurt.

A couple we just met,sead they didn’t want to get to close to us just in case something happens to me, becouae I have lung cancer.they didn’t want there kids and them to get upset, if I got sick,that really up set me.iv been a remmion for 5 year.

My mother had breast cancer. She had a masectomy and is on the clear. We all feel great and happy. The pain and fear is gone… and just 2 days ago my mother in law (nurse) asked about my mom, I tell her she is fine. Then she continues to tell me “Well is so sad to say but her cancer will kill her and you need to check yourself because you are going to have it too” Really!, then politely I tell her, well even if I have the gene it may or may not express so not to worry about it. She replied “Oh poor girl, you are on denial”.

So, cornered like always by my condescending, un-respectful and patronizing mother in law I just said, “that is not a nice thing to say”. I felt I had to say something to defend myself. It is so sad that people will tell you whatever is in their mind out of arrogance and then just cover it with, oh I just care about you.

Hi my name is Sierra and my one of my Grandparents was diagnosed with cancer and I haven’t met either of my grandparents sadly they died near the time I was born. I’ve met them when I was a baby but not when I could see. Sadly I have never talked to them and I never even got to say goodbye, I just hope I get to see them in another life and I pray that they look down on me. This is my dads parents hopefully my dad and his parents will soon meet again as in a country song “if heaven weren’t so far away”. think about the ones you’ve lost and remember the ones how will look over you in heaven and on earth.

I can honestly say this is the hardest thing I have ever done. I’m just a 65 year old man my life has been blessed married 46 years, one child. I can say for me this has been a very lonely journey as I didn’t want my family to know what I was really going through so they would think everything was OK.

Damn it’s been so very hard not only the pain but the attitude I portrayed as everything was OK.

My husband also only let people see him when he felt good and never told them how bad it really was. That backfired and now they hardly come around and are basically in denial about the cancer. It caused them not to take it as seriously as it is. Wish we would have been more transparent and didn’t try to hide things.